J. Mark Elwood, Simon B. Sutcliffe - Cancer Control PDF

Cancer Control
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Cancer Control
Edited by
J. Mark Elwood,
MD, DSC, FRCPC, FAFPHM
Vice-President, Family and Community Oncology,

British Columbia Cancer Agency,
Vancouver, Canada
Simon B. Sutcliffe,
MD, FRCP, FRCPC, FRCR
Board Chair, Canadian Partnership Against Cancer;

Past President, British Columbia Cancer Agency,
Vancouver, Canada
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and to Margaret, Siobhan, Sian, and Katie
Preface
Cancer control is the term applied to the development of integrated population-based approaches
to reduce the incidence and mortality from cancer and to minimize its impact on affected
individuals. It covers a spectrum of prevention, early diagnosis, optimal treatment, and supportive and palliative care. It emphasizes the application of current best practice and new knowledge
gained through research.
Cancer control has been a major initiative in several countries in recent years; in the United
Kingdom, France, Australia, and Canada, for example, cancer control developments have become
a political priority, in advance of any similar commitment in other diseases. This change in
approach was driven by the high level of public interest and concern about cancer, and stimulated
by the growing numbers of people affected; the higher public visibility of cancer, due largely to the
efforts of voluntary cancer organizations; rapid scientific developments, many requiring major
financial investment; and the availability of internationally comparable outcome measures such
as patient survival rates.
Most countries in the developed world, at national or regional level, are at some stage in the
evolution of cancer control strategic plans. These vary greatly in scope. Some plans concentrate
on specific areas such as radiotherapy provision or palliative care. Some plans originate from
non-government agencies and are concerned primarily with prevention, screening, or patient
support. More extensive cancer plans seek to integrate and improve the whole spectrum of care.
The extent to which research and evaluation is incorporated in cancer control plans varies
enormously. Most variable of all is the implementation, ranging from general statements of
support up to major health care reorganizations.
These developments are changing the approach used in the clinical care of cancer patients.
From the traditional model of centres of excellence focusing on the patients seen in that institution, and often autonomous cancer research centres, there is a shift towards the integrated control
of cancer, from prevention to palliation, and emphasis of the impact on all members of the population, and on maximizing the benefits gained from available resources.
The development and implementation of cancer control plans is a consultative process, involving public policy-makers, health care professionals (including providers, planners, and health
managers), health advocacy groups and organizations, patients and those who care for them, and
the informed public. As a result, most senior health care staff in oncology will be involved to some
degree in cancer control developments. Advocacy groups, the informed public, and interested
patients who are concerned with the big picture issues, including patient choice, resource allocation, quality of care, and moving new research results into practice, will all be involved in cancer
control.
This creates a need for an integrated readable overview of cancer control. No such book exists
at present. This book is planned to provide interesting, relevant, topical, and we hope challenging
viewpoints on key areas within cancer control, mainly from a developed country perspective, but
including world-wide viewpoints. We are very grateful to the chapter authors, people with
demanding positions and wide experience, representing many countries and disciplines, who
have been willing to contribute their time and skills to this book. We are very aware that many
important issues have not been explored fully, and that this topic is developing rapidly.
viii
PREFACE
We are grateful for the insights and stimulation from a vast range of colleagues and patients
over our professional lives, and the experiences we have gained in many countries. Our thanks for
assistance with the editorial work goes to Ruth Grantham, Anar Dhalla, Candace Elwood, and to
Georgia Pinteau, Eloise Moir-Ford, Nicola Ulyatt, and their colleagues at Oxford University
Press.
Mark Elwood
Simon Sutcliffe
Vancouver, 2009
Contents
Contributors xi
Part 1 The cancer challenge

1 Cancer control and the burden of cancer 3
Mark Elwood, Simon Sutcliffe
Part 2 Prevention and screening

2 Active cancer prevention 23
Graham Colditz, Courtney Beers

3 Achieving behavioural changes in individuals and populations 43
David Hill, Helen Dixon

4 Early diagnosis and screening in cancer control 63
Anthony Miller
Part 3 Applying new knowledge

5 Integrating science with service in cancer control:
closing the gap between discovery and delivery 81

Jon Kerner
6 The impact of immunization on cancer control:
the example of HPV vaccination 101

Ann Burchell, Eduardo Franco
Part 4 Optimizing patient care

7 Improving cancer services: the approach taken in England 131
Mike Richards
8 Population-based cancer control and the role of guidelines
towards a systems approach 153

George P. Browman, Melissa Brouwers, Batrice Fervers, Carol Sawka
9 The optimal provision of cancer treatment services 169
Michael Barton, Geoff Delaney

10 Managing the costs of new therapies: the challenge of funding new drugs 185
Susan E. OReilly, Jaya Venkatesh

11 Community supports for people affected by cancer 205
Michael Jefford
12 Improving quality of life 221
Shirley Bush, Eduardo Bruera
CONTENTS
13 Shifting the paradigm: from complementary and
alternative medicine (CAM) to integrative oncology 239

Anne Leis, Stephen Sagar, Marja Verhoef, Lynda Balneaves, Dugald Seely,
Doreen Oneschuk
14 Patient-centred supportive and palliative care 259
Genevieve Thompson, Carla Ens, Harvey Chochinov
Part 5 Integrated cancer control

15 From cancer care to cancer control: organization of
population-based cancer control systems 279

Simon Sutcliffe
16 Getting the public involved in cancer control
doing something besides worrying 297

Patricia Kelly, William Friedman, Tara Addis, Mark Elwood, Claire Neal,
Mark Sarner, Simon Sutcliffe
17 Organizational structures for cancer control 317
Lorraine Caron
18 Evaluating the outcomes of cancer control 341
Andrea Micheli, Paolo Baili, Roberta Ciampichini, Arduino Verdecchia

19 Priority setting methods and cancer control 363
Stuart Peacock, Lindsay Hedden, Craig Mitton

20 Ethics and the idea of cancer control 381
Lisa Schwartz
21 Integrating cancer control with control of other non-communicable diseases 399
Robert Burton, Jerzy Leowski Jr, Maximilian de Courten

22 Cancer control in developing countries 417
Ian Magrath
23 Strengthening the global community for cancer control 445
Simon Sutcliffe, Mark Elwood

Index 457
Contributors
Tara Addis, BSc

Chair,
Stakeholder Relations,
Campaign to Control Cancer (C2CC),
Toronto, Canada (Chapter 16)
Paolo Baili, PhD
Descriptive Studies and Health
Planning Unit,
Fondazione IRCCS Istituto
Nazionale dei Tumori,
Milan, Italy (Chapter 18)
Lynda Balneaves, RN, PhD
Associate Professor and CIHR
New Investigator,
University of British Columbia
School of Nursing,
Vancouver, British Columbia,
Canada (Chapter 13)
Michael Barton, OAM, MBBS, MD,
FRANZCR
Professor of Radiation Oncology,
South West Sydney Clinical School,
University of New South Wales,
Sydney, New South Wales,
Australia (Chapter 9)
Courtney Beers, MPH
Alvin J. Siteman Cancer Center
and Department of Surgery,
Washington University School
of Medicine,
St. Louis, Missouri, USA (Chapter 2)
Melissa Brouwers, PhD
Associate Professor and Head of Health
Services Research,
Department of Oncology,
McMaster University;
Provincial Director, Program in
Evidence-based Care, Cancer Care Ontario,
Hamilton, Ontario (Chapter 8)
George P. Browman, MD
Clinicial Professor
School of Population and Public Health
University of British Columbia, and
Department of Oncology
BC Cancer Agency,
Vancouver Island Cancer Centre,
Victoria, British Columbia,
Canada (Chapter 8)
Eduardo Bruera, MD
Department of Palliative Care and
Rehabilitation Medicine,
The University of Texas M.D. Anderson
Cancer Center,
Houston, Texas, USA (Chapter 12)
Ann N Burchell, PhD
Division of Cancer Epidemiology,
McGill University,
Montreal, Quebec, Canada (Chapter 6)
Robert Burton, MD, PhD, FAFPHM
Professor,
School of Public Health and Preventive
Medicine,
Monash University;
Melbourne, Victoria, Australia (Chapter 21)
Shirley H. Bush, MBBS, MRCGP,
FAChPM
Assistant Professor,
Division of Palliative Care,
University of Ottawa;
Palliative Care Physician,
The Ottawa Hospital and Bruyre
Continuing Care,
Ottawa, Ontario, Canada (Chapter 12)
Lorraine Caron, PhD
Consulting Researcher,
Agence dvaluation des technologies et des
modes dintervention en sant (AETMIS),
Montral, Qubec, Canada (Chapter 17)
xii
CONTRIBUTORS
Harvey M.Chochinov, MD, PhD, FRSC

Distinguished Professor and
Canada Research Chair in Palliative Care,
Department of Psychiatry,
University of Manitoba;
Director,
Manitoba Palliative Care Research Unit,
CancerCare Manitoba,
Winnipeg, Manitoba, Canada (Chapter 14)
Roberta Ciampichini, PhD
Descriptive Studies and Health
Planning Unit,
Graham A. Colditz, MD, DrPH, FAFPHM
Alvin J. Siteman Cancer Center
and Department of Surgery,
Washington University School of Medicine,
St. Louis, Missouri, USA (Chapter 2)
Maximilian de Courten, MD, MPH
Associate Professor of Clinical Epidemiology,
School of Public Health and
Preventive Medicine,
Monash University,
Melbourne, Victoria, Australia (Chapter 21)
Geoff Delaney, MBBS, MD, PhD, FRANZCR
Professor and Director of Cancer Services
Sydney South West Area Health Service,
Liverpool, New South Wales,
Batrice Fervers, MD, PhD

Centre Lon Brard, EA 4129 Sant,
Individu, Socit, Universit de Lyon, Lyon,
France (Chapter 8)
Eduardo L. Franco, MD, DrPH
Professor of Epidemiology and Oncology;
Director,
Division of Cancer Epidemiology,
McGill University,
Montreal, Quebec, Canada (Chapter 6)
William Friedman, PhD
Chief Operating Officer and Director of
Public Engagement,
Public Agenda,
New York, NY, USA (Chapter 16)
Lindsay Hedden, MSc
Research Scientist,
National Centre for Health Economics,
Services, Policy and Ethics in Cancer;
Research Scientist,
British Columbia Cancer Agency,
Canada (Chapter 19)
David J. Hill, AO, PhD
Director,
Cancer Council Victoria,
Carlton, Victoria, Australia;
President (200810),
International Union Against
Cancer (UICC) (Chapter 3)
J. Mark Elwood, MD, DSc, FRCPC, FAFPHM

Vice President,
Family and Community Oncology,
BC Cancer Agency,
Canada. (Chapters 1, 16, 23)
Michael Jefford, MBBS, MPH,

MHlthServMt, PhD, MRACMA, FRACP
Clinical Consultant,
Cancer Council Victoria;
Associate Professor of Medicine,
University of Melbourne;
Consultant Medical Oncologist,
Division of Haematology and
Medical Oncology,
Peter MacCallum Cancer Centre,
Melbourne, Victoria,
Carla D.L. Ens, MSc, PhD

Department of Community Health Sciences,
University of Manitoba,
Patricia Kelly, MA
Chief Executive Officer,
Campaign to Control Cancer (C2CC),
Toronto, Ontario, Canada (Chapter 16)
Helen Dixon, PhD

Senior Research Fellow,
Centre for Behavioural Research in Cancer,
Cancer Council Victoria,
Carlton, Victoria, Australia (Chapter 3)
CONTRIBUTORS
Jon F. Kerner, PhD

Chair, Primary Prevention Action Group,
Senior Scientific Advisor for Cancer
Control and Knowledge Translation,
Canadian Partnership Against Cancer,
One University Avenue, Suite 300,
Toronto, Ontario M5J 2P1 (Chapter 5)
Anne Leis, PhD
Professor and Dr. Louis Schulman
Cancer Research Chair,
Department of Community Health
and Epidemiology,
University of Saskatchewan,
Saskatoon, Saskatchewan,
Canada (Chapter 13)
Jerzy Leowski Jr, MD
Regional Adviser,
Non-communicable Diseases,
World Health Organization,
Regional Office for South-East Asia,
New Delhi, India (Chapter 21)
Ian T. Magrath, DSc (Med), FRCP, FRCPath
President,
International Network for Cancer
Treatment and Research (INCTR),
Brussels, Belgium (Chapter 22)
Andrea Micheli, PhD
Descriptive Studies and Health Planning Unit,
Anthony B. Miller, MD, FRCP
Associate Director, Research,
Dalla Lana School of Public Health,
University of Toronto,
Craig Mitton, PhD
Associate Professor,
University of British Columbia,
Canada (Chapter 19)
Claire Neal, MPH, CHES
Director of Education and
Program Development,
Lance Armstrong Foundation,
Austin, Texas, USA (Chapter 16)
Doreen Oneschuk. MD, CCFP

Division of Palliative Care Medicine,
Palliative Care Program,
Grey Nuns Community Hospital,
Edmonton, Alberta,
Canada (Chapter 13)
Susan E. OReilly, MB, FRCPC
Vice President,
Cancer Care,
BC Cancer Agency,
Canada (Chapter 10)
Stuart J. Peacock, DPhil
Co-Director,
(Canadian) National Centre for
Health Economics, Services,
Policy and Ethics in Cancer;
Senior Scientist,
British Columbia Cancer Agency;
Associate Professor, University of British
Columbia,
Vancouver, British Columbia, Canada
(Chapter 19)
Mike Richards, CBE, MD, FRCP
National Cancer Director,
England (Chapter 7)
Stephen Sagar, MBBS, MRCP, FRCR,
FRCPC, DABR
Radiation Oncologist,
Juravinski Cancer Centre;
Associate Professor,
Departments of Oncology and Medicine,
McMaster University,
Hamilton, Ontario,
Canada (Chapter 13)
Mark Sarner
President/CEO,
Manifest Communications,
Toronto, Ontario,
Canada (Chapter 16)
Carol Sawka, MD
Professor of Medicine,
University of Toronto, and VP Clinical
Programs and Quality Initiatives,
Cancer Care Ontario,
Toronto, Canada (Chapter 8)
xiii
xiv
CONTRIBUTORS
Lisa Schwartz, PhD

Arnold L. Johnson Chair in
Health Care Ethics,
Department of Clinical Epidemiology
and Biostatistics,
McMaster University,
Hamilton, Ontario, Canada (Chapter 20)
Jaya Venkatesh, MHA, CMA

Director,
Business Strategy and Operations,
Provincial Systemic Therapy Program,
BC Cancer Agency,
Canada (Chapter 10)
Dugald Seely, ND, MSc

Research Director,
Canadian College of Naturopathic Medicine,
Arduino Verdecchia, PhD

National Centre of Epidemiology,
Health Surveillance and Promotion,
Istituto Superiore di Sanit,
Rome, Italy (Chapter 18)
Simon B. Sutcliffe, MD, FRCP, FRCPC, FRCR

Board Chair,
Canadian Partnership Against Cancer,
Canada;
Past President, BC Cancer Agency,
Canada (Chapters 1, 15, 16, 23)
Genevieve N. Thompson, RN, PhD
Manitoba Palliative Care Research Unit,
CancerCare Manitoba;
Research Associate,
Faculty of Nursing,
University of Manitoba,
Marja Verhoef, PhD

Professor and Canada Research Chair in
Complementary Medicine,
Department of Community
Health Sciences,
University of Calgary,
Alberta, Canada (Chapter 13)
Part 1
The cancer challenge
Chapter 1
Cancer control and the burden of cancer

Mark Elwood, Simon Sutcliffe1
An introduction to cancer control

The terms cancer treatment, cancer care, and cancer control are often used interchangeably,
as if their meaning implied a common understanding of purpose, action, and outcome. However,
whilst they share a purpose to reduce the burden of cancer at an individual or population level,
they differ substantially in relation to the population served, the interventions applied, and the
outcomes (end-points) achieved.
Consider the following definition of cancer control:
Cancer control aims to reduce the incidence and mortality of cancer, and to enhance the quality of
life of those affected by cancer, through an integrated and coordinated approach directed to primary
prevention, early detection, treatment, rehabilitation and palliation.
The definition establishes that, if cancer control outcomes are to be improved, the population
to be served is the whole population, comprised of: the healthy, the high risk, and those who harbour asymptomatic (pre-clinical) cancer; those with a cancer diagnosis who need treatment;
those who are living with cancer as a chronic disease; those who are cured of their cancer; and
those who are dying of their cancer and require measures to bring dignity and comfort to the
end of life. Cancer control is as much about health, its promotion and maintenance, as it is about
managing the disease, cancer. By distinction, cancer care and cancer treatment refer to interventions in those with an established diagnosis of cancer either as a focus on therapeutic interventions (treatment), or on the needs of cancer patients and their families for all aspects of care that
confer living better with cancer. To use an analogy with a communicable disease, onchocerciasis
or River Blindness, treatment would imply measures to remediate blindness, care would imply
optimal support for the blind or visually impaired, whilst control would encompass all measures
to eradicate the cause and pathogenesis of a vector-mediated, parasitic illness.
These concepts are fully elaborated by Caron and colleagues [1], and discussed further in
Chapters 15 and 17. An adaptation of their framework is shown in Table 1.1 and highlights that
treatment is essentially a facility-based intervention according to defined or accepted protocols;
care describes the coordination and integration of activities to enhance well-being, including
treatment episodes, across the various locations and circumstances in which care is provided; and
control refers to the system response to meet the needs of the population served, encompassing
issues of awareness, communication, education, access, support, costs, etc. associated with interventions to control cancer.
1
J. Mark Elwood, MD, DSc, FRCPC, FAFPHM, Vice-President, Family and Community Oncology,
BC Cancer Agency, Vancouver, British Columbia, Canada; and Simon B. Sutcliffe, MD, FRCP, FRCPC,
FRCR, Board Chair, Canadian Partnership Against Cancer, Canada, and Past President, BC Cancer
Agency, Vancouver, British Columbia, Canada.
CANCER CONTROL AND THE BURDEN OF CANCER
Table 1.1 Contrasts between cancer treatment, cancer care, and cancer control
Approach
Cancer treatment
Cancer care
Cancer control
Target population
Patients with cancer

diagnosis requiring
treatment
Patients with
cancer diagnosis
requiring care
Entire population
from healthy to
end-of-life care
Risk reduction
Structural features
Facilities, centres,
and hospitals
Integrated care
networks
Inter-sectoral approach
to health and illness
Level of integration in
service delivery
Integrated treatment
protocols
Clinical care
pathways
Public health, health care

system, and community
service
Management focus
Institution, service
organization
Continuity of care
Health system
performance
An important point about cancer control in relation to care and treatment is the breadth and
nature of the interventions and to whom they are to be applied. Interventions to reduce the incidence of cancer, i.e. the number of new cases of cancer (cancer diagnoses), aim to prevent cancer
arising in the population without cancer interventions to minimize risk, remove causal factors,
and address circumstances leading or contributing to adverse choices, behaviours, or exposure.
Cancer control encompasses reduction in mortality, both as a consequence of reducing incidence
and of improving survival in those with a diagnosis of cancer; it also encompasses all measures of
care that contribute to an improved quality of life for those experiencing cancer.
The definition of cancer control implies that improvements in outcomes are expected a
reduction in incidence, a reduction in mortality, and an improvement in quality of life. Thus,
beneficial change is inherent in the definition of cancer control. Accordingly, a plan of action is
required contextually appropriate to the circumstances of the population to be served along
with a means of implementation, a clarification of roles of engaged parties, and an evaluation that
not only establishes that outcomes improve, but also describes the efficiency and effectiveness of
the measures in relation to the elements of cancer control, as well as to other health states and
competing choices for the allocation of resources.
In summary, if the populations needs are to be served in a manner that will reduce cancer
incidence and mortality, and improve quality of life for those experiencing cancer, a plan is
required that defines the population(s) to be served, the range of interventions to be applied
(from prevention to end-of-life care), the level of service access, quality and safety to be applied,
and the measures to be applied to define the benefit (absolute and relative). Whilst the content
and implementation of activities will differ according to the national context and resources, the
principles of cancer control are common to all populations. The following chapters address the
elements of cancer control, the intent being to raise awareness and understanding of the state of
current knowledge, whilst acknowledging that implementation at a population level will differ
according to the real-life circumstances facing nations and varying levels of development and
resource availability.
Measures of the burden of cancer

The burden of cancer is often expressed in terms of the most easily observable statistics, those of
deaths (mortality), and newly diagnosed cases (incidence). For example, the World Cancer
MEASURES OF THE BURDEN OF CANCER
Report 2008 from the World Health Organization (WHO) and the International Agency
for Research in Cancer (IARC) [2], interprets cancer burden primarily in terms of incidence
numbers, estimating that in 2008 there were 12.4 million incident cases of cancer in a world
population of 6.7 billion, and this is estimated to rise to 26.4 million new cases in 2030. This projection, like most, is driven predominantly by growth in population numbers and aging of the
population, and the incidence rate component is estimated as a one per cent annual increase. In
many developed countries, however, the trend in incidence rate of all cancer has been neutral or
downwards; in the United States, incidence rate fell by 0.8 per cent per year from 1999 to 2005 [3].
There is still often confusion between trends in incidence numbers and trends in rates. Whereas
trends in numbers are critical in terms of service demands and costs, increases due to population
growth and population aging are outside the realm of cancer control, which targets the cancer
risk to the individual expressed as the age-adjusted or age-specific cancer incidence rate. Cancer
organizations have not been immune from this problem, and the public is often confused by
messages that cancer is an ever-increasing problem (and therefore deserving of their interest and
contributions) and that cancer is being reduced or controlled (showing the value of their contributions and of research). Simple presentations showing the proportion of future trends due to
population growth, due to population aging, and the residual, which is due to changes in cancer
incidence rates, are useful; for example, in Canada, the numbers of new cases and deaths from
cancer have risen greatly in the last 30 years, despite little change in incidence rates at different
ages, and in spite of some reductions in death rates [4], Figure 1.1.
Incidence, mortality, and years of life lost

Reported cancer incidence rates depend on the recognition, diagnosis, and classification of
cancer. Rapid changes in the recorded incidence of some cancers may be due to changes in classification systems or diagnostic abilities. Processes which diagnose cancers that would previously
have gone undetected, and processes which diagnose cancers earlier and therefore shift the age
distribution downwards, will increase age-standardized incidence rates. Many silent cancers are
found in pathological examinations in individuals who have died of other causes, having been
unobserved in life. Such cancers may be detected with the use of further tests; but the benefits and
risks of such extra diagnosis are difficult to assess. This has been particularly marked in prostate
cancer, where recent incidence trends in developed countries have been greatly affected by the
increasing use of a blood test for prostate specific antigen (PSA) [5]. This effect also applies to
other cancers for which screening is done, such as breast and colorectal cancers; changing diagnostic methods are also thought to relate to increases in the recorded incidence of melanoma,
renal, and thyroid cancers [3,6]. So, whereas one of the prime objectives of successful cancer
control is to reduce the incidence of cancer through successful primary prevention, successful
early detection (sometimes confusingly referred to as secondary prevention), may act to increase
incidence. In developing countries, with less effective and widespread medical services, the issues
of consistency of diagnoses can be even more critical.
The great majority of reports on cancer incidence omit what is in some populations the most
common cancer of all, non-melanoma skin cancer. These are cancers arising in the skin, apart
from melanoma, which are very common in light-skinned populations exposed to high levels
of sun exposure. They are very common, often multiple in an individual, and almost always
easily cured by simple surgical excision, but because of the work load needed to record them
these cancers are usually not included in cancer registries. In white-skinned Australians, nonmelanoma skin cancers (estimated by special surveys) are more common than all other cancers
combined, and the cumulative incidence risk is over 50 per cent by age 65; that is, more people get
skin cancer than avoid it [7]; however, they cause few deaths.
Incidence
90
Cases (in thousands)
90
80
80
70
70
Aging population
60
60
Population growth
50
50
40
40
(1980 cancer rate)
30
Rate change
30
20
Estimated
20
10
10
0
1980
1985
1990
1995
2000
2005
0
2009
Year
Mortality
40
Deaths (in thousands)
40
35
35
30
25
20
30
Aging population
25
Population growth
20
(1980 cancer rate)
15
Rate change
15
10
10
Estimated
5
0
1980
1985
1990
1995
2000
2005
0
2009
Year
Fig. 1.1 The dominant effects of age changes and of population growth on the numbers
of new cases and deaths from cancer. Data for Canada for 19802009, for males. For mortality,
age-specific deaths rates have fallen, but numbers of deaths continue to rise.
From: Canadian Cancer Societys Steering Committee: Canadian Cancer Statistics 2009. Toronto:
Canadian Cancer Society, 2009 [4]; with permission.
A more robust measure of cancer burden is cancer mortality; the prime objective of cancer
control is to reduce cancer mortality. In interpreting trends, the issues of distinguishing population growth, population aging, and the underlying age-dependent mortality rates are analogous
to those applying to incidence. Recorded mortality rates depend on death certification practices.
While on an individual basis the recorded cause of death is often inaccurate, on a population
75
550
Rate per 100000 population
500
Heart disease
Accidents
450
400
50
350
Chronic obstructive
pulmonary disease
300
250
Cancer
200
25
150
Stroke
100
Diabetes mellitus
50
0
0
1970 1974 1978 1982 1986 1990 1994 1998 2002
1970 1974 1978 1982 1986 1990 1994 1998 2002
Year of death
Year of death
Fig. 1.2 Trends in six leading causes of death in the United States. Age-standardized rates.
From: Jemal et al., JAMA 294: 125559, Copyright 2005 American Medical Association. All
rights reserved.
aggregate basis, mortality rates for total cancer and for the major types of cancer are quite robust,
although issues of certification do need careful consideration. This is particularly the case where
a cancer may be frequently diagnosed in life but is not the cause of death, with again the clearest
example being prostate cancer.
Reporting the rank order of causes of death is popular with the public and the media but sometimes misleading, as it depends critically on the groupings used. In recent statistics, cancer is given
as the leading cause of death in, for example, Australia and Canada, with cardiovascular disease
(heart disease and stroke) coming second. This represents the success in the reductions in mortality in cardiovascular diseases [8] (Figure 1.2). In the United States, the combined total of cardiovascular diseases still exceeded that of cancer in 2005 [9], but if the cardiovascular total is split
into stroke and heart disease, then cancer emerges as the leading cause of death; also, on current
trends, cancer is likely to overtake cardiovascular disease by 2010. In contrast, many World
Health Organization (WHO) publications, including the important burden of disease work,
subdivide cancer into several specific cancers, with the result that cancer appears very low in the
rank order of causes of death [10].
The burden of disease can be expressed by measures which take into account both numbers of
deaths and age at death, for example, by years of life lost (YLL) calculations, that is, by years of
expected life lost, compared to normal life expectancy, or up to an arbitrary limit, such as age 70.
This is a very crude measure, as it treats each year of life up to that age as equally important, but
discounts completely expected years of life after the cut-off age; although weighting systems can
be used to give different weights to life years at differing ages.
Prevalence
Prevalence of cancer is quite a complex issue. The simplest definition is the number of people
living in a community who have had a diagnosis of cancer; most calculations (as with incidence)
exclude non-melanoma skin cancer because of its extremely good prognosis and minimum disability. A time cut-off is often used because of the difficulty of linking data over a long period; for
example, using only diagnoses in the previous 5, 10, or 15 years; referred to as limited-duration
prevalence. Estimates of the prevalence unrestricted by date of diagnosis (complete prevalence)
can be made from such data [11]. For the United States in 2006, with a total population of
298.4 million, total cancer prevalence estimates were 4.1 million within 5 years of diagnosis,
6.8 million within 10 years, 8.9 million within 15 years, and 11.4 million estimated complete
prevalence [12]. This total prevalence figure is 3.8 per cent of the total population, or one person
in 26. While successful primary prevention will reduce prevalence by reducing incidence, other
cancer control measures, such as better and earlier diagnosis and improvements in treatment
giving longer survival after diagnosis, will increase the prevalence of cancer, so rising prevalence
rates usually represent successes in cancer control; Canadian estimates show a 21 per cent increase
over six years up to 2004 [13]. Table 1.2 shows the inter-relationships between several measures
of burden of disease, for the United States; the 15-year prevalence estimate for 2009 is 7.5 times
the annual incidence rate.
People alive after a diagnosis of cancer will cover the spectrum from those whose lives are
unaffected by their previous diagnosis because the disease was minor or previous treatment
was successful, to people who require extensive care and have severe disabilities [14]. Estimates
have been made of the prevalence of patients in such different groups, as described further in
Chapter 18.
Survival after diagnosis

Cancer survival relates to the time course of disease after diagnosis, extending to death due to
cancer or other causes, and is usually expressed as the proportion of patients alive at, for example,
five years after diagnosis, or as the median survival, being the time point at which 50 per cent of
a group of diagnosed patients are still alive. To be meaningful in terms of cancer control, cancer
survival rates should be based on all patients with a particular type of cancer diagnosed in a given
population, rather than being restricted to a particular hospital where selection by referral will
occur. Population measures are usually expressed as the relative survival ratio, being the ratio of
the observed survival for a group of cancer patients to the survival expected for people of the same
age and sex in the general population, based on population mortality data (life tables). The slope
of the curve of relative survival by time represents the excess death rate compared to the general
population death rate, and one definition of cure is the demonstration that the curve becomes
horizontal, so that the mortality after that time is the same as in the non-cancer population.
Cancer survival is the most direct measure of the effects of the combination of timely diagnosis
and effective therapy, and as such has major importance; the comparison of cancer survival rates
between European countries was the major driver of changes in cancer care services in England,
as described in Chapter 7. The experience with this comparative analysis within Europe has been
extended to worldwide comparisons through the Concord programme [15], which as well as
providing important factual information, has further clarified the challenges of making valid
comparisons between countries and between time periods. For example, in US data, the use of
state- and race-specific instead of national life tables has been shown to considerably influence
relative survival ratios, and differences in pathological classification, for example for gastrointestinal tumours, between Japanese and North American pathologists has given considerable differences in recorded survival [15]. More challenging is taking into account variations in diagnostic
practice, not only through screening but also through differences in normal clinical diagnosis, as
a chronologically earlier diagnosis will increase lead time, which will increase the survival time
after diagnosis even if true natural history is unaffected.
Disparities in cancer burden and outcomes

Disparities in cancer burden and outcomes, between and within countries, show many opportunities and gaps in cancer control. Cancer incidence varies greatly between countries, over time,
Table 1.2 Key measures of the cancer burden, for the United States, 2000 and estimates for 2009
US estimates year 2000
Total population
282.2 million
Incidence number of new cases
1,220,110
Deaths number of deaths
552,200
Ratio to incidence
US estimates year 2009
Ratio to incidence
Source
306.8 million
1,479,250
0.45
562,340
[35,36]
0.38
Person-years life lost person-years
8,450,000
6.9
Prevalence, diagnosis in last 15 years
8,400,000
6.9
11,100,000
7.5
Costs $billions 2000
Costs per incident case $
Costs $billions 2009
Costs per incident case $
[33,36]
[33]
[36,45]
37.0
30,325
93.2
63,005
[36,45]
indirect morbidity costs/year
11.0
9,016
18.8
12,709
[36,45]
indirect mortality costs/year
59.0
48,356
116.1
78,486
[36,45]
Overall costs
107.0
87,697
228.1
154,200
Value of lives lost @ $150,000 per YLL
960.6
787,306
[33]
Lifetime lost productivity
232.4
190,475
[35]
Health care costs - direct/year
10
and by key demographic indicators such as age and sex; some differences may be due to differences in external risk factors which can be targeted, such as smoking; other differences may reflect
intrinsic biological factors which may not be amenable to change within our present knowledge;
yet others may be linked to complex factors such as socio-economic circumstances. Disparities in
cancer outcomes, such as survival and mortality rate, may point to key issues that require attention. Within the countries of Europe, there are very substantial differences in cancer survival, and
survival is related to several measures of total and health-related national resources, as discussed
further in Chapter 18 [16,17]. Survival, adjusted for other mortality, is substantially lower in
older patients, suggesting less effective health care [17].
In the United States, cancer survival is substantially lower in the black than in the white population for almost all cancers. For example, 5-year survival rates for breast cancer were 84.7 per cent
in white women and 70.9 per cent in black women; for colorectal cancer they were 60.8 per cent
in white women and 50.5 per cent in black women [15]. Survival is lower in those without health
insurance, and in lower socio-economic groups [1820]. This reflects both a worse stage distribution, implying lower awareness of symptoms or less access to good diagnostic and screening
services, and also worse outcomes within stage categories, implying less access to treatment, lower
quality of treatment, or less complete participation in treatment. It is relevant that in the United
States, within the Veterans Affairs system that provides relatively standardized care for military
veterans, several cancer outcomes show much less racial variation [21]; the authors of the Concord
study concluded that the data strongly suggest that equal treatment yields equal
outcome, irrespective of race [15]. The Concord study shows that in Australia and Canada
cancer survival was high, with only small regional variations, reflecting more equitable good care
systems.
Indigenous people in several countries Native Indians in the United States [22], aboriginals
in Australia [23], and Mori in New Zealand [24] all show a similar pattern: compared to the
majority white population, they have higher rates of lung cancer (as smoking prevention has been
less effective), and of cervical cancer (as participation in screening is lower), and lower cancer
survival in general (probably due to both later stage at diagnosis and issues of access to and
participation in care). These populations are key examples of the failure to extend the benefits
of existing cancer control systems and knowledge across the barriers of socio-economic and
educational disadvantages, rural and remote locations, and cultural differences. These differences
are consistent with the demographic transitions in developing countries described in Chapters 21
and 22.
Disability- and quality-adjusted life years

The concept of disability-adjusted life years (DALYs) was developed to estimate effects both on
length of life (mortality) and on quality of life (morbidity), and has been the focus of the Burden
of Disease programme of the World Health Organization [25]. The burden of a disease is measured by the years of life lost up to normal life expectancy (YLL), plus the years lived with disability, calculated as the years lived with the disease (YL) multiplied by an assessment of disability D
ranging from very severe (scores approaching 1, equivalent to death) to no disability (score 0, so
there is no addition to the DALY calculation); thus the total DALYs = YLL + YL D. The D scores
are typically assessed by disease, age, and sex. The WHO uses the same normal life expectancy for
all world populations, rather than the observed country-specific life expectancies. In some work,
years of life at different ages are considered equal, but in others years at younger and older ages
are weighted less, on both human capital and social preference grounds [26]. Since 2000, the
WHO has published regular burden of disease updates for the world and 14 regions, which
include mortality estimation, cause of death analysis, and measurement and evaluation of functional health status (http://www.globalburden.org/index.html).
The use of DALYs allows comparisons of the impact of different interventions to include both
programmes designed to reduce mortality and those designed to reduce morbidity and increase
quality of life. For example, in Australia a range of cancer control initiatives including preventive
programmes, screening programmes and therapeutic and supportive interventions were compared using the gain in DALYs (that is, the extent to which the total of DALYs currently lost from
the disease is reduced by the intervention) as the key outcome measure, and comparing this with
the costs of each programme, to allow a rational system of priority ranking [27]; this is further
discussed with results shown in Application 4 in Chapter 19.
Other work uses quality-adjusted life years (QALYs). The QALY is a health expectancy measure related to life expectancy, while the DALY is a health burden or health gap measure related
to years of life lost. The familiar concept of life expectancy gives the expected life years remaining to a person, irrespective of the quality of that life; to calculate QALYs a quality score Q where
1 represents full health and lower scores represent compromised quality is applied to each lifeyear. In contrast, as noted earlier, the DALY is a health burden measure: it is the sum of the
number of person-years of life lost and the years of life lived with a disability, these assessed using
a D score which increases with increasing disability from 0 to 1. So, where these scores are measured by the same methods, D = 1 Q, and Q = 1 D. A beneficial intervention will reduce the
burden of disease assessed in DALYs, and will increase the expectancy of life assessed in QALYs.
In practice there are other differences in how the measures are calculated, for example, giving
different weights to years of life at different ages, and taking into account variations in health
status over time [28].
Both these calculations have the weakness that the methods used to obtain the disability scores
are always open to challenge, and may be based on the largely subjective views of relatively small
numbers of people. They can also be challenged on their ethical basis: both methods are explicit
in rating a year of life of a person with a disability less valuable than a year of life of a non-disabled
person, which may be regarded as contrary to, for example, the United Nations Declaration of
Human Rights [29].
Economic impacts
Extending beyond the concepts of disability- or quality-adjusted life years, the impact of cancer
and the potential benefits of cancer control programmes can take into account the effects of
cancer on society in economic costs. One simple example shows the importance of such issues. As
noted earlier, in Australia non-melanoma skin cancers are very common; indeed, it is the cancer
with the greatest burden in terms of direct health care costs, the costs being twice those of lung
cancer although the DALY burden is only five per cent of that of lung cancer [27].
The economic effects of cancer include direct costs of health care services for cancer (including
prevention, screening, supportive and palliative care), and indirect costs including loss of
economic earning potential, reductions in the tax base, and the impact of cancer on the activity
of family members and carers [30]. Indirect costs may also include the patients costs for travel to
treatment appointments, and for supportive care and non-specific medications, for example, for
nausea. The impact of current or proposed cancer control methods can be assessed in these terms.
Such estimates may be looked at questionably by physicians and scientists used to more precise
methods of measurement, as inevitably these projections require many assumptions. But it is
more relevant to compare these methods, not to the outcomes of laboratory experiments or
clinical trials, but to other similar analyses which drive policy, for example, investments in roads,
11
12
communication infrastructure, industry, or in other social programmes. Predictive modelling

forecasting the economic burden of cancer and the economic and social benefits that could result
from successful cancer control have often provided persuasive information to government policy
makers, one example being the work on economic projections done by the Canadian Strategy for
Cancer Control [31]. For instance, a report from the Milken Institute in the United States in 2007
[32] estimates the economic burden of chronic diseases including cancer in terms of treatment
costs, productivity losses, and foregone economic growth based on estimated returns of human
capital investment. This shows, for example, that while the number of people reporting chronic
diseases in United States in 2003 was 10.6 million for cancer compared to 49.2 million for pulmonary conditions, the loss in productivity was $271 billion for cancer compared to $94 billion for
pulmonary conditions, with additional treatment expenditures of $48 billion for cancer and $45
billion for pulmonary conditions.
Two approaches to valuing mortality losses are the human capital (HC) approach, in which
age- and sex-specific average earnings data is added to information on years of life lost, thus giving greater weight to higher earning years of life; for example, years for men aged 5559 would
carry more weight than those for women aged 6069, or aged 1519; and the willingness-to-pay
(WTP) method, in which weights are derived from surveys assessing how much people would be
willing to pay for an extra year of life at different ages. Both methods have been applied in recent
US analyses [33,35].
Using the WTP method, the person-years of life lost (PYLL) for cancers in the United States in
2000, and then projected to 2020, were used with a figure of $150,000 per year based on WTP
research, and an annual discount rate of 3 per cent [33]. This compares to a gross domestic product (GDP) per capita in the US of $36,000; the WHO has suggested that a valuation of a year of
life at three times a countrys per capita GDP is appropriate in international health care assessments [34]. Some overall results are given in Table 1.3. The total value of life lost in the United
States from cancer in 2000 was $960 billion, increasing to $1471 billion in 2020 (using the
American billion, 1000 million). Whereas the death rates from all cancer are much higher in older
people, the PYLL and value of life lost are comparable for those under 65 and those over 65. Also
notable is that in 2000, although the death rates were higher in men, the PYLL and value of life
lost were both higher for women. The analysis gives detailed data by cancer type, and using various scenarios for the projections; the greatest value of life lost (both sexes) was for lung cancer,
followed by colorectal cancer and breast cancer.
Using the human capital approach, applied to essentially the same US epidemiological data
on cancer, estimates were made of lost earnings based on the probability of employment and
expected earnings (and benefits) for different age and sex groups [35]. To this base model were
added estimated costs of caregiving and household activities (equal to 72 per cent of employment
earnings in men, but 180 per cent in women), and again a 3 per cent discount rate to estimate
present value. This method will give more importance to high-earning periods of life, whereas the
WTP method described previously used the same value for any year of life. In the human capital
analysis, the present value of lost earnings (PVLE) for all types of cancer in 2000 was $116 billion,
projected to increase to $148 billion by 2020, with the biggest contributors being lung, colorectal,
and breast cancers. Continuing the present trend of reducing mortality rates by 1 per cent per year
for six major cancers would reduce productivity losses by $814 million per year.
These figures are much lower than those given by the WTP method, where the average value of
a year of life lost is $133,000 (different from $150,000 because of discounting), whereas the value
based on lost productivity is only $28,000. The human capital approach focuses on economic
productivity, ignoring other aspects of life; however, the WTP method as used here gives the same
value to a year of healthy vigorous life as to a year with severe disability. Both methods give values
Table 1.3 Results of both willingness-to-pay and human capital assessments based on cancer
mortality in the United States
Willingness-to-pay method, using $150,000 per year of life (a)
Year 2000 in more detail
Total, 2000
Total, 2020
Age-adjusted mortality rate

per 100,000, 19992003
Person-years of life lost
(millions)
8.45
Value of life lost ($ billions)
960.6
Average value per PYLL

($ thousand)
113.7
1472.5
Men
Women
<65 yrs
>=65 yrs
<65 yrs
>=65 yrs
69.6
1446.5
60.2
883.7
2.15
1.88
2.33
2.08
222.4
245.8
227.9
264.5
Human capital approach, based on estimated earnings (b)

Estimates for 2010
Total, 2000
Person-years of life lost
(excludes age under 20)
Total, 2020
Total
Men
Women
8.29
Present value of lifetime

earnings PVLE ($ billion)
115.8
147.6
124.9
81.2
43.7
Caregiving, household
activity
116.6
160.4
136.8
58.5
78.3
Total including
caregiving etc.
232.4
308.0
261.7
139.7
122.0
Average PVLE per year of

life lost ($ thousand)
28.0
(a) Data from Yabroff et al. 2008 [33].

(b) Data from Bradley et al. 2008 [35].
much higher than the estimated direct costs of cancer care, about $93 billion in 2009 [36]. Both
methods as used here are based only on the impact of cancer deaths: loss of productivity and loss
of quality of life due to cancer morbidity are not considered. These economic analyses can
be influential in targeting investments in cancer control strategies and in research; for example,
both methods highlight the great impact of lung cancer, which has generally been poorly
supported by research and indeed in the public interest compared to some other cancers like
breast cancer [37].
Direct health care costs

The direct health care costs of cancer are critical in cancer control as the balance between needs
and resources is a limiting factor in cancer control in all countries, and the justification of cancer
control policies includes increasing value for the investments made in health services and
in research. Direct care costs in the United States were estimated in 2009 as $93.2 billion [36],
13
14
equating to $63,000 per incident case (see Table 1.2); this is at least twice as high as in most other
countries. The United States does show the best survival rates overall [15], although with considerable internal racial and geographic variations; but the differences in survival between the United
States and Canada, Australia, and some countries in Europe are small, while all these countries
have much lower health care costs. The aspect of cost which receives most attention is drug costs,
and they are rising rapidly, as discussed in Chapter 10 in this book. Rational and evidence-based
cancer control has a major role: in the United States in 2004 Medicare drugs for oncology totalled
$5.3 billion, but of this $1.5 billion was for erythroid growth factors [38], which are of questionable value and are much less used outside the United States [39].
The wider perspective

The burden of cancer can thus be considered at a macro level in terms of its effects on mortality,
on morbidity, on health services demand, and on society as a whole. Considerations at the micro
level deal with the effects of cancer and its interventions on quality of life in individual patients
and groups of patients, and also on their families and carers, and are discussed in several chapters
in this book. The impact of cancer, as with any other disease or disability, depends not only on its
biological effects on the individual, but also on the attitudes and reactions of the family and the
wider community to the disease and its sufferers. Such reactions can be supportive and positive,
but can also be insensitive and negative. In most developed countries there has been a major shift
in individual and societal attitudes within the last few decades, with open communication about
cancer and its treatments and effects, and the acceptance of people who have been diagnosed with
cancer as fully functional members of their families and communities. This attitude in the best
circumstances has produced a positive and supportive atmosphere around cancer survivors,
seen most clearly in the social networks and support surrounding women with breast cancer.
There are, however, considerable differences in the level of support and acceptance of breast
cancer compared with some other cancers such as colorectal and lung cancer [40], and other
diseases; for example, the need to achieve a similar level of societal acceptance and support for
sufferers from psychiatric disease as now exists for patients with cancer has been stressed [41].
Cancer control and the burden of cancer

There is an inverse relationship between cancer control and the burden of cancer the more
effective the control of cancer, the less the burden. It is important to recognize that cancer is a
process that starts in health and so is amenable to control measures exerted both in health and
illness. The diagnosis of cancer is an event in the process, the growth of neoplastic cells, from
which the consequences of disease and its therapy contribute to the burden of cancer, both
individual and societal. This burden is a consequence of the failure to control cancer from an
incidence, mortality, functionality, and quality of life perspective.
Figure 1.3 demonstrates the increasing burden of cancer with increasing age in a population.
The lifetime cumulative risk of developing cancer, for example in Canada, is around 42 per cent
(males 45, females 40), and of dying from cancer is around 26 per cent (males 28, females 24)[4].
The areas under the two curves are a chronological expression of the population burden of
cancer, relating to the mortality and incidence burdens; the area between the two curves relates
to those who have experienced cancer incidence but not mortality, that is, cancer prevalence or
cancer survivors. The segment of the population above the incidence curve represents the majority of the population who have not experienced cancer incidence, but have the accruing liability
of the process of carcinogenesis, and includes those who will subsequently develop cancer. Cancer
incidence increases rapidly and substantially after the age of 50 years; although risk of cancer
Cumulative incidence/mortality %
Population at risk
50
40
Primary
prevention
30
Incidence
20
Reduction in
risk exposure
Cancer incidence
Mortality
Early diagnosis
10
0
Cancer mortality
30
40
50
60
70
80
90
Successful
treatment
100
Age
Fig. 1.3 Concept of the rising burden of cancer mortality and of incidence with age, and the role of
cancer control. Cancer incidence will be reduced by successful primary prevention, altering risk and
exposure profiles, although it can be increased by earlier diagnosis; cancer mortality will be reduced,
in addition, by early detection and successful treatment; for cancer prevalence, represented by the
area between the curves, the burden will be decreased by treatments with lower morbidity and
supportive care increasing quality of life.
commences from birth, cancer will not be a major population burden if life expectancy from birth
is less than about 55 years, but it will be an exponentially increasing burden as a consequence
of increasing longevity.
Studies on the natural history of pre-cancerous lesions determined by early detection
procedures and of benign precursor lesions in relation to the development of invasive cancer,
e.g. bowel polyps, indicate that the process of carcinogenesis is initiated years or decades prior to
the diagnosis of cancer. Thus the factors underlying susceptibility and risk are at play long before
clinical cancer is evident. Indeed, one might say that being born, indeed being conceived, constitutes eligibility for cancer and that living involves exposure to factors that will either increase or
decrease the probability of developing cancer in later life.
The risk factors for cancer and the magnitude of the attributable risks of various factors are well
recognized. The choices, however, of what control can be exerted over exposure to risk vary:
The risk may be truly optional, i.e. there is recognition of the risk, and the ability to mitigate
the risk through exercising an applicable choice. This implies that not only is it possible
to remove exposure to the risk factor, but that life circumstances (mental, physical, social,
economic) are conducive and appropriate to make a sustainable change to risk exposure.
It may be conditional, i.e. there may be knowledge and recognition of risk exposure, but
changing exposure may be limited by, or be conditional upon, sustainable changes in life
circumstances that pre-dispose to risk exposure (primordial risk factors), and may inhibit
changing the exposure.
It may be an unalterable exposure, a consequence of hereditary genetic predisposition (e.g.

familial adenomatous polyposis, the breast cancer genes BRCA I or II, Li Fraumeni syndrome)
or the presence of a risk factor that cannot be feasibly mitigated (morbid obesity, physical
handicap) in the context of the individuals life circumstances.
15
16
The options available for intervention to reduce the burden of cancer, and their degree of
success, will cover the natural history of the condition and include: primary prevention; early
diagnosis including for a few cancers population-based screening; therapy with direct effects on
the cancer; therapies to overcome or more likely ameliorate the secondary effects of the cancer;
therapies to supplement the individuals physical and mental coping skills; and practical measures
to reduce the effects of disability, culturally appropriate supportive and palliative care. Societys
attitudes to those affected by the disease will influence both the availability and the success of
these interventions. Decisions, policy, funding, or indeed lack of attention, by local communities
and regional, national, and international governments influence all these approaches to the
cancer burden.
The impact of the broader societal development context upon cancer control can be illustrated
through the Human Development Index (HDI), an index combining normalized measures
of life expectancy at birth, literacy, educational attainment, and gross domestic product
per capita [42,43]. Comparing countries, cancer control outcomes correlate with the HDI,
which is not of surprise given that the HDI incorporates measures of education, employment,
and the economy. What is more relevant, however, is that it is difficult to enhance cancer
control outcomes if there is not commensurate enhancement in measures to improve the
HDI. Transposing the processes and procedures that contribute to more favourable cancer
outcomes in countries with a high HDI to countries with a lower HDI, whether preventive or
interventional to manage established cancer, are unlikely to have impact unless they act in concert
with, and in the context of, measures to enhance human development. Given that the factors
influencing human development clean water, nutritious food, physical activity, education,
employment, and personal and societal growth are operative throughout childhood, adolescence and early adult life, the relevance of social and economic development in relation to risk
factor exposure choices, behaviours, and health options to the accruing liability and the future
burden of cancer is apparent [44]. Not only is this relevant for health and cancer outcomes, but
also for the consequences of societal inequity associated with social exclusion, marginalization,
dissatisfaction and the inability to capitalize on personal and societal development and
well being.
How then should we think about how best to advance cancer control from the perspectives of
the nation under consideration and the potential roles of those who might offer assistance?
A simple analogy is that of saving people who fall into a river and are at risk of drowning.
Strategically, is it better to go downstream and maximize efforts to save people before drowning,
or is it better to go upstream and prevent them from falling into the river? Whilst the answer
might reasonably be do both, the answer needs to be placed in the context of the ability of the
nation to commit resources to going upstream or downstream, and the reality that for nearly
all nations more people will continue to fall in and it is becoming increasingly expensive to
implement downstream solutions.
The chapters in this book address issues of the accruing liability for cancer burden posed
by risk factors and environmental exposure, as well as the burden of established cancer. The
intent is to provide current state knowledge about measures to reduce the burden through
effective interventions, recognizing that the principles of population-based cancer control
(what should be done and why?) are common to all nations. The challenge is the application
of the principles within the real life context of nations (how, by whom, and when?) and the
ability to address the underlying inequities and disparities that militate against the opportunity
to access and benefit from health interventions that precede improvement in cancer control
outcomes.
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19
Part 2
Prevention and screening
Chapter 2
Active cancer prevention

Graham Colditz, Courtney Beers1
The success and further potential of prevention

Fifty to sixty per cent of cancer deaths can be prevented [1]. Such estimates traditionally draw
largely on international variation in cancer incidence and mortality, as well as the changes in risk
observed in studies of migrants and reduction in risk of smoking-related cancers after stopping
smoking. Recently a small number of randomized trials of prevention strategies including vaccination have added to the evidence base. Given that the majority of cancer can be prevented with
what we already know, public health authorities, health care providers, and individuals have
responded with the adoption of prevention targets and strategies that include implementation of
regulations to enforce health-related protections, global public health campaigns to impact personal, community, and corporate decisions that improve lifestyle, and decrease environmental
and occupational exposures to carcinogens. Active strategies to prevent cancer are the focus of
this chapter. Other strategies such as early detection and effective treatment of diagnosed cancer
cases are also clearly critical in improving quality of life for individuals with cancer and for
decreasing cancer-related deaths, and are addressed elsewhere in this book.
There is still much work to be done as the number of cancer deaths is expected to grow from
12 million new cases and 7 million deaths from cancer in 2008 to a projected 26 million new cases
and 11.4 million deaths in 2030 [2]. The leading causes of cancer mortality in the world are
lung (1.4 million deaths per year), stomach (866,000), colon (677,000), and breast (548,000).
Approximately 72 per cent of cancer deaths occurred in low and middle income countries in
2007, where the leading causes of cancer mortality are: lung, stomach, liver, colon and rectum,
and cervix. Increasing cancer death rates can be attributed, in part, to the aging population and
also the epidemic of tobacco use in the developing world [3], with additional increases in female
cancers due to changing reproductive patterns [4].
One important omission from such estimates of the proportion of cancer that can be prevented
is detailed understanding of the time course of risk reduction for many of the behaviours that
cause cancer and consideration of achievable or sustainable change in exposure to the causes.
Except in rare settings, such as cessation from smoking cigarettes, the time course to achieve
reduction in the cancer burden is not quantified. Cigarette smoking does, however, offer strong
evidence on the change in cancer risk after stopping smoking at the individual level. Peto has
demonstrated that by 1990 in the United Kingdom smoking cessation had almost halved the
number of lung cancers that would have been expected if the former smokers had continued
smoking [5]. Furthermore, he showed substantial benefit of stopping at an earlier age for men in
the United Kingdom compared to continuing to smoke to age 75. For example, a man who stops
smoking at age 40 has a cumulative risk to age 75 of 3 per cent compared to 6 per cent if he
1
Graham A. Colditz, MD, DrPH, FAFPHM; and Courtney Beers, MPH, Alvin J. Siteman Cancer Center and
Department of Surgery, Washington University School of Medicine, St. Louis, Missouri, USA.
ACTIVE CANCER PREVENTION
Men
16
Continuing cigarette smokers
Stopped age 60
Stopped age 50
Stopped age 40
14
Stopped age 30
Lifelong non-smokers
12
10
Cumulative risk (%)
24
0
45
55
65
75
Age
Fig. 2.1 Cumulative risk of lung cancer and age at stopping smoking, UK, men.
From Peto et al. 2000 [93], with permission from the BMJ.
stopped at 50, 10 per cent if he stopped at 60, and 16 per cent for the continuing smoker (see
Figure 2.1).
The benefit of reduced risk has also been addressed in the United States with detailed data on
individual smoking behaviours updated every two years among women in the Nurses Health
Study [6]. Kenfield and colleagues showed that risk of death due to lung cancer was reduced by
THE SUCCESS AND FURTHER POTENTIAL OF PREVENTION
Lung cancer mortality

1
HR and 95% CI
0.8
0.6
0.4
0.2
0
<5
5 to <10
10 to <15
15 to <20
20
Years since quitting smoking

Hazard 1 = current smoker
Dashed line never smoker
Fig. 2.2 Reduction in mortality from lung cancer compared to continuing to smoke, by time since
quitting smoking, Nurses Health Study, 1980 to 2004. The y-axis is a log scale. The error bars
denote 95 per cent confidence intervals. The reference category consists of current smokers. The
horizontal dashed line indicates a never-smokers risk. Adjusted for age (months), follow-up period,
history of hypertension, diabetes, high cholesterol levels, body mass index, change in weight from
age 18 years to baseline (1980), alcohol intake, physical activity, previous use of oral contraceptives,
postmenopausal oestrogen therapy use and menopausal status, parental history of myocardial
infarction at age 65 years or younger, cigarettes smoked per day during the period prior to
quitting, and age at starting smoking.
From Kenfield et al. 2008 [6], p. 2046, with permission from the JAMA.
Smoking-caused cancer mortality

1
HR and 95% CI
0.8
0.6
0.4
0.2
0
<5
5 to <10
10 to <15
15 to <20
= 20
Years since quitting smoking

Hazard 1 = current smoker
Dashed line never smoker
Fig. 2.3 Reduction in mortality for all smoking related cancers compared to continuing to smoke,
by time since quitting smoking, Nurses Health Study, 1980 to 2004. Details as described in
Figure 2.2.
From Kenfield et al. 2008 [6], p.2046, with permission from the JAMA.
25
26
50 per cent within 10 years of stopping, and a similar reduction in mortality was observed for all
smoking-related cancers [6] (see Figures 2.2, 2.3).
In contrast with data on individuals, Barnoya and Glantz evaluated the population changes
in cancer mortality after the introduction of the California Comprehensive Tobacco Control
Program in 1988. They observed a significant reduction in lung cancer in San Francisco compared to other US SEER registries corresponding to a 6 per cent reduction in lung cancer incidence over the 10 years after the programme was introduced [7]. Reductions were also observed
for bladder cancer, but not for cancers known not to be related to smoking. The California
Comprehensive Tobacco Control Program is a population-wide effort to reduce tobacco consumption in the state. This programme stressed clean indoor air and policies to create smoke-free
environments [8] and increased taxation resulting in an accelerated decline in smoking prevalence [9]. Evidence clearly supports population-level prevention strategies for tobacco control
and reduction in smoking-related cancers. Though not immediate, the trend to reduced cancer
burden is well documented.
The impact of change in level of exposure to other causes of cancer, or following the implementation of prevention strategies, is less well supported by rigorous evaluation. Several important
aspects of the time course of prevention interventions must be considered. These are (1) the ability of interventions to sufficiently change the exposure, (2) the timing in the process of carcinogenesis, or the development of cancer, and (3) how sustained the behaviour change is over time
[10]. This last issue, in particular, plagues randomized trials of screening and lifestyle change (e.g.
with diet or vitamins) in that adherence to the experimental and control interventions has not
been high [1113]. For example, approximately 40 per cent of women stopped the intervention
in the Womens Health Initiative and many of the control women dropped in, or began using
the intervention agents. For interventions of calcium and vitamin D, the magnitude of the intervention was not sufficiently large (vitamin D) nor did the calcium supplementation adequately
address low-intake women to achieve the reductions in colon cancer incidence observed in epidemiologic studies and polyp prevention trials [14].
Vaccination programmes offer yet another insight to the time frame of intervention and the
ultimate reduction in cancer incidence. For cervical cancer prevention with human papilloma
virus (HPV) vaccine, the current US Center for Disease Control (CDC) recommends vaccination
for women between ages 13 and 26; the benefit of this prevention will be observed many years
hence. Hepatitis vaccination programmes in Africa and Asia offer further illustration of these
points. In the Gambia a programme launched in 1986 aims to evaluate the effectiveness of childhood vaccination with hepatitis B and current estimates are that the final outcome of reduced
hepatocellular carcinoma in adults should be measurable from 2017 onwards [15]. In Asia with
nationwide hepatitis B vaccination implemented in Taiwan in 1984, results at 10 years show
significant reduction in hepatocellular carcinoma in children [16]. Clearly many years of
follow-up are required to demonstrate protection of adults, though this outcome is implied by
results to date.
In sum, the time course to achieve reduction in cancer incidence through active prevention
programmes may vary substantially. The timing of the intervention in the time course of carcinogenesis, and the ability of individuals or populations to maintain the lifestyle changes necessary
to reduce the cancer burden, both contribute to the ultimate benefit of the active prevention
intervention. One population that shows how much reduction can be achieved through longterm adherence to a cancer reducing lifestyle is the members of the Seventh Day Adventist Church
in the United States. This population avoids smoking, alcohol, and consumption of meat, being
largely lacto-ovo-vegetarian, and shows an overall 27 per cent lower cancer mortality among men
than the US population at large [17]. Reductions in cancer mortality among women were lesser,
NINE FOCUS AREAS FOR ACTIVE PREVENTION
in part because of the burden of breast and other reproductive cancers that may not respond to
changes in diet and smoking.
Given the potential impact on disease burden, cancer prevention is an international health
priority. However, there is wide variation in the resources allocated to prevention and in the
approaches and effectiveness of programmes. Success is often dependent upon political commitment, regulatory/legislative backing, funding, and involvement of stakeholders in the programme
development and implementation phases. Strategies range from regulation and taxation of cigarettes to health-service coverage of counselling or pharmaceuticals to support cessation. A determinant of successful prevention programmes is identified in Richmond and Kotelchucks health
policy model as the interplay between the three critical components of prevention: scientific
knowledge base, political will, and a social strategy [18]. These components are evident in the
following descriptions of international prevention programmes focused on individual, health
care providers, community, and/or regulatory approaches in nine key areas.
Nine focus areas for active prevention

We focus on nine key areas where prevention efforts have the potential to significantly impact
cancer incidence, quality of life, and mortality in developed countries and worldwide: tobacco,
alcohol, physical activity, weight control, diet and dietary supplementation, sun exposure,
infections, environmental and occupational exposures, and medications.
In Table 2.1, we summarize the relative contribution of these causes, based partly on a quantitative review of risk factors for specific cancers by Danaei and colleagues [19]. This approach is more
conservative than the earlier approach of Doll and Peto who estimated the overall proportion of
cancer that could be avoided mainly by comparing high and low risk populations [20]. Danaei and
colleagues limit their prevention estimates to lifestyle changes that could reasonably be achieved,
and base these estimates on a limited number of cancers for which a consensus approach leads to
a causal inference. Estimates for smoking are comparable in both reports because Doll and Peto
used the American Cancer Society (ACS) Cancer Prevention Study 1 mortality data (for cancers of
the lung, mouth, larynx, oesophagus, bladder, and pancreas) and estimates for other cancers (such
as kidney and liver) to derive their estimate of 30 per cent of cancer mortality [20].
However for obesity, for example, the ACS data indicate that 14 to 20 per cent of cancer mortality is attributable to obesity [21], whereas the Danaei estimate is limited to only breast, colon, and
uterus [19], omitting causal evidence for oesophagus (as classified by the IARC report [22]) and
for other cancers (liver, pancreas, multiple myeloma, and non-Hodgkin lymphoma) identified as
having significant excess mortality among overweight and obese participants in the ACS cohort.
Thus, in contrast with the ACS mortality data, Danaei and colleagues use more conservative consensus approaches to causal inference and attribute only 3 per cent of cancer in high-income
countries to overweight and obesity. Further, Danaei and colleagues omit drugs such as postmenopausal hormones for breast and endometrial cancers, chemoprevention, and vaccination
programmes against infectious agents. We have included these. For each area, we will discuss the
contribution of the factor to cancer incidence and prevention; effective policy and/or programmatic approaches that have been successfully implemented to achieve sustained changes in
behaviour; and the likely time course for prevention, if it is known.
Tobacco
Established as the primary cause of cancer-related deaths and considered the single largest
preventable cause of cancer in the world [23], the impact of tobacco on international health is
hugely detrimental. Tobacco smoking causes bladder, cervical, oesophageal, kidney, laryngeal,
27
28
Table 2.1 Proportion of cancer (per cent) that could be prevented through modification of lifestyle
factors, drugs, chemopreventive agents, and vaccines
High-income countries
Worldwide
Smoking
29
21
Alcohol
Overweight and obesity
Physical inactivity
Diet: low fruit and vegetable intake
Lifestyle
factors1
Sun exposure
2 (ignored by Danaei)
1 (ignored by Danaei)
Environment and occupation
14
? Unknown
610
Currently minimal
10
Currently minimal
Currently minimal
Minor impact
816
Medical interventions2
Medications
Postmenopausal oestrogen plus progestin therapya
SERMs (Tamoxifen and
Raloxifene)b
Aspirin (colon cancer)c

Vaccines
HPV and Hepatitis B vaccinesd
1. Lifestyle estimates from Danaei et al. [19]
Risk factors were selected for consideration if they were likely to be a leading cause of worldwide or regional disease
burden. An expert work group completed a systematic review to obtain a relative risk estimate. Population attributable
fraction was then estimated for the selected cancers.
2. Medication estimates derived as follows:
a. Colditz 2007; using US prevalence of use and relative risks [71].
b. Chen et al 2007; using results from randomized trials and US population estimates [82].
c. Aspirin: 20% reduction in risk among those using aspirin for more than 10 years is plausible but risk benefit
considerations limit widespread use for colon cancer prevention. Current user estimate of 3% is based on prevalence of long term uses in Chan et al [94].
d. Vaccines: Cervix, stomach, and liver cancer account for over 33% of cancer mortality in low and middle income
countries; 18% worldwide [64]. Vaccines have been shown to be effective. Preventive benefit is determined by
delivery of vaccine to population to reduce cancer by 50 to 100%.
lung, oral, pancreatic, and stomach cancers and acute myeloid leukaemia (AML) [24]. In the
United States alone, smoking causes at least 30 per cent of cancer deaths annually; globally
tobacco will kill more than five million people. Risk increases with daily consumption as well as
duration of smoking. Second hand smoke poses significant risk as well, which makes tobacco the
only legal consumer product that can harm everyone exposed to it. Furthermore the reduction in
mortality from tobacco-related cancer after cessation from smoking is substantial, attaining
mortality rates of never-smokers in 20 to 30 years [6].
The World Health Organization promotes population-wide anti-tobacco policies and
programming as evidenced in its MPOWER [25] strategy:
Monitor tobacco use and prevention policies
Protect people from tobacco smoke
Offer help to quit tobacco use

Warn about the dangers of tobacco
Enforce bans on tobacco advertising, promotion, and sponsorship
Raise taxes on tobacco
Approaches to tobacco control include restriction on who can purchase tobacco products and
where individuals can smoke, advertising bans, clear warnings and health information on labels
(including pictorial representations of the detrimental effects of smoking), and price increases
through taxation.
The effectiveness of strict restrictions on advertisements and health labels has been demonstrated in Brazil, where the prevalence of smoking declined from 35 per cent of adults in 1989 to
22 per cent in 2003 after legislative action related to tobacco promotion [26]. Though tobacco is
critical to Brazils industry, the Ministry of Health has taken multiple approaches to reducing
tobacco use. In 2000, law was enacted that restricted advertisement of tobacco products and
forbid merchandising at and sponsorship of cultural and sports events (Federal Law 10.67).
Additionally, Brazil requires poignant health warnings and images on all tobacco products.
Approaches at the provider and individual levels have also proven to be effective when
implemented as part of large-scale state-driven programmes such as those in California and
Massachusetts. Funded by the California Tobacco Tax and Health Promotion Act in 1988, the
California Tobacco Control Program (CTCP) was the first of its kind with a comprehensive,
social-norm approach to reducing tobacco use state-wide. Despite tobacco industry spending in
California being more than 5 times greater than the tobacco control programme funding, focused
programmatic attention on countering pro-tobacco influences in the community, reducing
second hand smoke exposure, and reducing tobacco availability, were effective as demonstrated
by decreasing smoking-attributable cancer mortality rates in adults 35 years and older to a point
where they are significantly lower than comparable US rates [27]. Efficacy of this comprehensive
state programme is also evidenced by results of random surveys employed to assess smoking
prevalence (13.7 per cent in adults in 2005 a 28 per cent decline since 1990), smoking cessation
(quit attempts in the past year were reported for 52.9 per cent of smokers in 1990 and 58.5 per
cent in 19992005), sustained quit attempts of 90 days or longer (10.9 per cent of smokers in 1999
as compared to 13.7 per cent in 19992005), increased use of nicotine replacement therapy to
facilitate quit efforts (13.7 per cent in 1996 versus 18.8 per cent in 2005), and other factors, not all
of which produced positive results [28].
In sum, comprehensive tobacco control programmes are necessary to achieve reductions
in cigarette smoking furthermore these must be sustained over time to achieve long term health
benefits and reductions in the burden of cancer. The reduction in risk of lung cancer is rapid with
50 per cent risk reduction in less than 10 years [6]. Complementing population strategies a range
of individual cessation approaches is now widely used. A remaining challenge for tobacco control
policies and priorities is the trade-off between focusing on children and youth to prevent initiation or focusing on adults to achieve cessation and faster returns of a reduced cancer burden. The
1994 report of the US Surgeon General highlights the importance of balancing the priorities and
maintaining a focus on youth to avoid industry dominance and recruitment of a new generation
of smokers [29].
Alcohol consumption
Alcohol is estimated to cause 4 per cent of all cancers in high income countries [19], with a higher
burden in men than women reflecting overall intake. Health risks increase with heavier drinking
29
30
leading to oral cavity, pharynx, larynx, oesophagus, liver, breast, and colorectal cancers [30].
Risks increase further when heavy alcohol use is combined with smoking.
The public health message regarding alcohol can easily be confused since research has demonstrated protective effects of alcohol on cardiovascular disease [31]. Data from the American
Cancer Society study of 46,000 deaths among 490,000 men and women highlight the trade-off
of protection against cardiovascular disease and the increase in cancer. The J-shaped curve for
alcohol consumption and all-cause mortality has its lowest point at 1 drink per day for both men
and women [31]. From a cancer perspective and for public health benefits, programmatic
approaches should focus on decreasing consumption through laws and regulation, sale and
driving restrictions, and/or pricing and taxation, for example; in general, including both a
population-based and individual-level approach. The time course for change in risk following
reduction in alcohol intake is not well quantified.
Physical activity
Globally, inactivity causes close to 2 million deaths each year [32]. Lack of activity is linked to
most major chronic diseases, including type II diabetes, osteoporosis, stroke, cardiovascular disease, and cancer. Based on a rigorous systematic review of published evidence, the World Cancer
Research Fund reports there is convincing evidence that physical activity decreases risk for colon
cancer, probable evidence of a decrease in post-menopausal breast cancer and endometrial
cancer, and suggestive evidence of an impact on lung, pancreas, and pre-menopausal breast
cancer [30]. Growing evidence points to physical activity substantially reducing pre-menopausal
breast cancer [33,34] as well as other chronic diseases.
Physical activity recommendations have varied but largely aim to achieve the equivalent of
30 minutes of moderate activity per day, such as brisk walking [35]. Methods for initiating and
sustaining this level of physical activity have been studied extensively. Among the approaches that
are effective in increasing physical activity are informational interventions (point of decision
prompts to encourage stair use and community-wide campaigns); behavioural and social
interventions (school-based physical education, social support in community settings, and
individually-adapted health behaviour change); and environmental and policy intervention
(creation of or enhanced access to places for physical activity combined with informational
outreach activities) [36].
Providing general health recommendations alone does not ensure uptake. Studies indicate that
the use of primary care based programmes employing exercise on prescription can be beneficial.
One New Zealand study in general practice indicated that the proportion of middle-aged women
attaining 150 minutes of moderate activity per week increased from 10 per cent at baseline to
39 per cent at 24 months, quality of life improved, although no significant differences in clinical
outcomes were observed [37].
Overall, the metabolic effects of increasing physical activity are well documented both for the
insulin-glucose pathways and other endogenous hormones, but the time course for change in risk
of cancer remains largely undocumented.
Weight control
Obesity is increasing at epidemic rates around the world [22]. US data from 2003 to 2004, report
that 66 per cent of adults are overweight or obese (BMI 25) and 32 per cent of adults are obese
(BMI 30) with a rising trend since 1988 [38]. Overweight and obesity cause a substantial proportion of several cancers, including oesophageal, colorectal, endometrial, kidney and postmenopausal breast cancers [22] Public health recommendations call for adults to stay within the
recommended BMI range (18.524.9) and avoid weight gain. Accordingly, in its Global Strategy
on Diet, Physical Activity, and Health, the WHO identifies energy balance and maintenance of
a healthy weight as a public health priority and charges member states to develop and support
multi-sectoral programmes to address weight, diet, and physical activity; thereby decreasing noncommunicable disease worldwide [39].
Programmatic recommendations include interventions that integrate physical activity and diet
for more sustained behaviour change. At the grade school level, Gortmaker and colleagues have
successfully integrated approaches to diet, activity, and TV viewing into the school curriculum,
achieving a sustained intervention and significant increases in fruit and vegetable consumption,
reduction in TV viewing [40], and in a second study also reducing obesity [41]. In adult populations, a randomized trial achieved sustained weight reduction over two years through diet and
activity interventions by health care providers, and resulted in reduced progression to diabetes
among men and women at elevated risk [42]. Whole community interventions are exemplified by
one in Belgium that included multiple strategies (media campaign, environmental approaches,
use of pedometers, and local projects) and resulted in a significant increase in the proportion of
the population achieving a target of 10,000 steps per day [43].
Given the preponderance of evidence that sugar-sweetened beverages increase the risk of obesity and diabetes, a growing number of interventions are now focused on strategies to reduce
intake through substitution of other beverages that do not contribute to the excess energy intake.
In addition to individual behaviour change, strategies that alter access through limiting on-school
campus sale and increasing taxation or removing tax protection may further reinforce behaviour
change.
Because of limited success in achieving sustained weight loss, cancer outcomes have been rarely
studied. One important finding from the Nurses Health Study shows that weight loss after menopause that is sustained results in a significant reduction in incidence of breast cancer in the short
term [44]. This is consistent with changes in hormone levels with weight loss. The time course of
risk reduction for other cancers or precursor lesions remains to be clarified.
Diet and dietary supplementation

Related to physical inactivity and weight control, though having an effect on cancer prevention
that is independent from weight, diet is now estimated to account for considerably less than
35 per cent of cancers as estimated by Doll and Peto [20], though the evidence was limited and
they gave an acceptable range from 10 to 70 per cent. Most estimates for the contribution of diet
have included overweight/obesity in the effect of diet, yet only total energy intake exceeding
energy expenditure is convincingly related to weight gain. Specific components of diet increase
cancer risk at specific sites, such as red and processed meat and colon cancer, contaminants such
as aflatoxin and liver cancer, while non-starchy vegetables reduce risk of cancers of the mouth,
oesophagus, and stomach [30]. Because of benefits in preventing other major chronic diseases
such as cardiovascular disease and diabetes, it is estimated that a global increase in fruit and
vegetable consumption would save 2.7 million lives annually [32].
International recommendations prescribe a diet high in fruits and vegetables (at least 413
servings per day) with emphasis placed on nutrient-rich green leafy vegetables, orange vegetables,
and legumes. Avoiding certain foods potentially decreases cancer risk, such as salt-preserved
meats or other foods, red meat, and very hot food or drinks. The US National Cancer Institute
(NCI) recommends that only 20 to 35 per cent of daily calories be from fat; comprised of primarily polyunsaturated or monounsaturated fats in fish, nuts, and vegetable oils, 10 per cent
saturated fats, and as little trans fat as possible [45].
31
32
Randomized trials of fibre, fruit and vegetables, and risk of colon polyp recurrence have not
shown any benefit from increased intake [46,47], and the Womens Health Initiative trial of
reduced fat intake (along with increased fruit and vegetable intake) to prevent breast cancer did
not show a significant reduction in risk over 8.1 years [48]. The level of adherence to diet in this
long-term study limited the likelihood of the trial showing benefit.
The California State Department of Public Health has promoted 5-a-day consumption of fruit
and vegetables, using a number of strategies including worksites. This and similar approaches
have been promoted in many countries. Research projects modelled on this strategy were implemented in nine NCI funded projects to evaluate its effectiveness. For example, Sorensen and
colleagues showed that a multi-component intervention that included media exposure to 5-a-day
messages, programmes aimed at individual behaviour change, and worksite environment changes
could significantly increase fruit and vegetable consumption [49]. Multi-component interventions to achieve sustained dietary changes are supported by studies such as this. Barriers to achieving a maximally healthy diet include higher costs and lack of ready access to fresh fruit and
vegetables.
Strategies to improve diet and lower disease risk include counselling and regulatory approaches
as well as farm-based interventions. Rather than focus on whole food consumption, much
research has focused on specific nutrients leading to chemoprevention strategies that modify
exposure to bioactive agents. For example in Finland, to overcome low selenium levels in the soil
and because trials indicated that higher selenium may reduce cancers of the lung, colon, and
prostate [50], a fortification intervention was introduced. Selenium was applied with fertilizer,
and blood selenium levels rose rapidly following the ecologic intervention, though there has been
no apparent decline in incidence of prostate or colon cancers [51]; and a subsequent randomized
controlled trial in the United States (the SELECT trial) showed no overall benefit of increased
selenium, nor a reduction in prostate or colon cancers [52]. Thus it is highly unlikely that increasing selenium intake will be beneficial for cancer prevention.
Other nutritional agents have also been tested in chemoprevention trials in the developed
world and in China [53]. Based on evidence that people in Linxian, China, had low intakes of
several nutrients, a randomized trial comparing combinations of retinol, zinc, riboflavin, niacin,
vitamin C and molybdenum, beta-carotene, vitamin E, and selenium was undertaken [54].
Significant reductions in mortality were observed for those who received the combination of
beta-carotene, vitamin E, and selenium and the reduction was greater for those who began the
therapy at a younger age. In contrast, studies have shown no benefit of beta-carotene in high risk
smokers (The Alpha-Tocopherol Beta-Carotene trial was stopped early because of excess lung
cancer in men randomized to beta-carotene) [55], or in men at high risk due to smoking or asbestos exposure [56]. Similarly among average risk populations [57] no benefit was observed.
Together these trials show strong evidence against the hypothesis that beta-carotene can substantially reduce risk of lung cancer. However, if dietary antioxidants such as beta-carotene act early
in the carcinogenic process, trials such as these would not have detected any benefit. Further
study of diet across the full time course of carcinogenesis is clearly necessary.
Substantial evidence supports a link between vitamin D and reduced incidence of colon
cancer the third most common cancer among both men and women in the United States.
Studies show that people with higher circulating vitamin D levels can have as little as half the risk
of developing colon cancer as those with lower vitamin D levels [58]. This and other possible
benefits were reviewed systematically by the International Agency for Research on Cancer
(IARC) [58], and led to the recommendation that better understanding of possible adverse health
effects of population supplementation, and the possible variation in benefits depending on
the baseline serum 25-hydroxyvitamin D level, are necessary before recommending routine
vitamin D supplementation for cancer prevention. Further research is needed to define the
optimal dose or level of vitamin D, its efficacy in reducing cancer incidence, and the time course
for change in risk of cancer after increasing levels.
Sun exposure
The sun, as the primary source of ultraviolet radiation, poses a significant risk of skin cancer
particularly in fair-skinned Caucasians. Internationally, nearly 60,000 deaths are attributed to
over-exposure leading to malignant melanomas and skin cancer annually [59]. Observing trends
of increasing rates of skin cancer, the US National Cancer Institute reports 60,000 new cases in
2007 in the United States alone [45]. Prevention recommendations as simple as avoiding the sun
in peak hours (approximately 10 a.m. to 3 p.m.), covering skin whenever possible, protecting
exposed skin with sunscreen, and avoiding tanning booths are effective in reducing skin cancer
incidence if these lifestyle changes are adopted, particularly, at an early age.
The Center for Disease Control Task Force on Community Preventive Services concluded that
school-based educational/policy interventions (for children) and recreational-based educational/
policy interventions (for adults) were effective in reducing sun exposure [60]. Both types of
interventions are well represented by the Australian SunSmart programme, ongoing since 1982,
(formerly Slip! Slop! Slap!) which aims at reducing UV exposure through access to shade and
consistent use of protective clothing, hats, sunglasses, and sunscreen. Examples of SunSmart programming include accreditation of schools that adhere to its policy and practice requirements
and collaboration with governmental agencies to protect outdoor workers. Montague et al. credit
the programme with changing attitudes regarding sun tanning, increases in protective behaviour,
decreased costs of sun protection gear, societal acceptance of more protective attire (including
hats, sunglasses, and neck to knee swimsuits for children) and, most importantly, decreasing
incidence rates of skin cancer [61]. Dobbinson et al. concluded that sun-protective behaviour had
increased from 1987 to 2002 during which time the SunSmart programme was active [62]. The
evidence from Australia indicates that active prevention efforts including television advertising
campaigns can be highly effective in improving the population-wide sun-protective behaviours,
resulting in falling age-specific incidence rates for melanoma, in younger birth cohorts [63].
Infections
The aetiology of some 18 per cent of cancers worldwide can be linked to chronic infections due
to agents such as Helicobacter pylori, human papillomaviruses (HPV), Hepatitis B, Hepatitis C,
Epstein-Barr virus (EBV), human immunodeficiency virus (HIV), human herpes virus 8
(HHV-8), and Schistosoma haematobium [64], with the proportion of all cancer due to infections being much higher in developing countries (26 per cent, compared to 7.7 per cent in developed countries). The current burden of cancer in the developing world is dominated by infection,
once smoking is accounted for. Of 10.8 million new cases of cancer worldwide (2002 figures),
those caused by infectious agents are estimated as: H. pylori 5.5 per cent (mainly stomach, and
lymphoma); HPV 5.2 per cent (mainly cervix, and ano-genital, mouth, pharynx); HBV and
HBC 4.9 per cent (liver); EBV 1.0 per cent (nasopharynx, Hodgkin lymphoma, and Burkitt lymphoma), HIV and HHV 80.9 per cent (Kaposi sarcoma, non-Hodgkin lymphoma) and other less
common agents including schistosomes, HTLV 1 per cent, and liver flukes less than 0.5 per cent.
More than 25 per cent of cancer incidence in developing countries could be avoided if infectious
causes of cancer were prevented [64]. Successful vaccination programmes have the potential to
reduce cancer incidence and mortality; for example, Taiwans HBV vaccination programme was
initiated in 1984, and impressively high coverage rates (up to 97 per cent in 2004) have led to
33
34
a consistent decline in hepatocellular cancer rates [16]. However, a recent study by Chang et al.
underscores the importance of a multi-pronged approach. Though Taiwan has seen a decrease in
the incidence of hepatocellular cancer in children since initiation of the vaccination programme
(from 0.54 to 0.20 per 100,000 before and after the programme), vertical transmission, vaccine
failure, and the lack of hepatitis B immunoglobulin injection has affected programme effectiveness and public health impact [65].
Environmental and occupational exposures

Environmental exposures account for 1 to 4 per cent of cancers. Occupational exposures such as
asbestos, arsenic in drinking water, food contaminants such as aflatoxins and pesticides, and
radiation exposure are classified as environmental carcinogens, but in countries with established
market economies, exposure is now largely limited by regulation to reduce harm. International
agencies have responded by identifying carcinogens (e.g. IARC classification of carcinogenic
compounds) and regulating use, exposure, and protection for employees in the case of occupational hazards.
The WHO has identified legislative enforcement of identification and elimination/reduction
approaches, government-driven dissemination of information and awareness-raising activities,
and increased access to information as effective strategies to combat carcinogenic environmental
exposures [66]. An end result is that, in some cases, production has been exported to countries
with more lenient requirements for environmental exposure and contaminants thereby
not eliminating, but shifting, the cancer risk from an international scope. Despite regulatory
changes in many countries, exposure to asbestos, for example, continues through occupations
such as construction, ship work, and asbestos mining. Given the long lag between exposure
and lung and pleural cancers, mortality from asbestos-related disease is estimated to remain at
90,000 per year [67].
Regulation and oversight of non-occupational hazards can be more difficult; for example,
indoor air pollution primarily from burning coal and cooking oil. A recent meta-analysis conducted by Zhao et al. confirmed an association in China between indoor air pollution and lung
cancer [68]. In a separate study, the impact of solid fuel-related air pollution on the Chinese
population was implicated in causation of approximately 420,000 premature deaths each year
[69]. In the 1980s and 90s, Chinas Ministry of Health implemented the National Improved Stove
Program that intended to improve fuel-efficiency by providing biomass stoves with chimneys.
The programme was . . . the largest and most successful improved stove programme ever implemented anywhere in the world [70]. While the programme was successful in improving preprogramme indoor air quality levels, subsequent testing in a random sample of houses indicated
the need for continued improvement, as the indoor air quality was still not compliant with
Chinese indoor air pollution standards. Successful enforcement of approaches to reduce exposure
to known carcinogens in both the work place and the home is necessary to achieve successful
cancer prevention.
Medications
Medication use is widespread in the high income countries and limited in low and middle income
countries. Strong evidence supports several medications as either causing cancer, e.g. postmenopausal hormone therapy with oestrogen plus progestin [71], or reducing cancer, e.g. oral contraceptives and ovarian cancer [72], aspirin and colon cancer [73]. For combination oestrogen plus
progestin, the IARC has now classified this combination therapy as carcinogenic in humans [74]
and estimates indicate that the reduction in use of hormones after the widespread publicity of the
results of the Womens Health Initiative (stopped early due to excess breast cancer) accounts for
approximately a 10 per cent decline in incidence among women 40 to 70 years of age [71]. Thus
for this combination therapy evidence shows that risk rises with duration of use and that acting as
a late promoter, removal of the drug leads to a rapid decline in incidence [71], though among
women with longer durations of use risk may not return to that of women who have never
used combination therapy [75]. Other less widespread drugs may also contribute to cancer risk
(e.g. DES), but the population impact will be substantially smaller than the examples based on
much more widespread use described in earlier sections.
For some medications that reduce risk, the benefits have been limited to date to those who have
had specific indications for use of the medication. Broader population strategies may be developed for more widespread protection, such as could be achieved if all women took oral contraceptives as a chemopreventive for a minimum of 5 years (see Chemoprevention herein).
Chemoprevention
Oral contraceptives As noted earlier, use of oral contraceptives (OCs) for 5 years halves a
womans risk of ovarian cancer and substantially reduces risk of endometrial cancer. The protection is long lasting and in high income countries rates of use approach 80 per cent. Adverse effects
are largely limited to increased risk of breast cancer and stroke while currently using OCs.
As these side-effects are strongly age-dependent, use of OCs during late teens and early 20s could
be widened for greater reduction in ovarian and endometrial cancers and overall net health
benefit [76].
Aspirin The use of aspirin has been extensively studied in observational epidemiologic settings
that address duration of use, dose, and magnitude of risk reduction. The observational evidence
is consistent with evidence from randomized primary prevention trials showing that use of
300 mg or more of aspirin a day for 5 years or more is effective in preventing colon cancer; reducing risk by approximately 25 per cent [77]. A latency of about 10 years is observed. Like all
chemoprevention strategies, risks and benefits must be balanced [78]. To date, the risk-benefit
considerations of cardiovascular disease, bleeding complications, stomach pain, and heart burn
have precluded recommendations for aspirin use as a widespread prevention strategy [79].
Selective oestrogen receptor modulators (SERMs) Drugs such as Tamoxifen and Raloxifene
have been shown in randomized controlled prevention trials to reduce risk of pre-invasive and
invasive breast cancer [80,81]. While Tamoxifen increases risk of uterine cancer, this is not so for
Raloxifene and the risk profile for Raloxifene looks considerably safer [82]. Based on this, we have
estimated the potential for risk reduction among women over age 50 who are postmenopausal.
Our estimates indicate that if the trade-off of excess adverse events versus cases of breast cancer
prevented must be less than 1, then approximately 30 per cent of the 27 million women between
ages 50 and 69 in the United States have benefits exceeding risks, and would achieve a 50 per cent
reduction in the burden of breast cancer by taking a SERM. This is a population benefit of
42,900 fewer cases of invasive breast cancer among the more than 7 million women with
sufficiently high risk to justify chemoprevention [82]. The reduction in risk observed in the chemoprevention randomized trials is rapid; within 2 years of beginning therapy, incidence curves
have clearly separated. This is consistent with the pharmacologic action of the agents inhibiting
oestrogen receptors. Importantly these agents show protection against oestrogen receptor (ER)
positive breast cancers (risk reduction up to 76 per cent) and no protection against receptor negative cancers [81]. While models to classify risk of breast cancer have been developed and validated, to date prediction of receptor positive tumours is no more accurate than prediction
of risk overall [83]. Refining risk stratification and developing tools to aid women in considering
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36
trade-offs of risks and benefits of chemoprevention therapy are necessary next steps to widespread use of these promising strategies for women at elevated risk of breast cancer.
Balancing priorities: high risk versus individual or tailored

prevention strategies
A major challenge for active prevention programmes is to balance the components of a social
strategy, actions through health care providers, those through regulatory changes and those
focused on individual behaviour changes [18]. Are we to focus on provider delivered strategies
tailored to the risk level of the individual or embark on active population-wide efforts? We note
that in the case of colon cancer, estimates from the Health Professionals Follow-up Study indicate
that the majority of men have multiple modifiable risk factors [84]. Only 3 per cent of this population of middle-aged and older men had no modifiable risk factors for colon cancer. Similar
results were observed for women in the Nurses Health Study when considering prevention of
heart disease and diabetes. With population-wide changes increasing the level of physical activity,
reducing intake of alcohol, increasing folate intake, reducing adult weight gain and obesity, and
reducing red meat intake, up to 70 per cent of colon cancer could be avoided. Of course, screening
offers additional cost-effective strategies for early detection of cancers and removal of precursor
polyps [85,86]. For example, if the entire US population increased their level of physical activity
through walking for an additional 30 minutes per week we would reduce the burden of colon
cancer by 15 per cent [87]. This then is a highly preventable malignancy for which numerous
population-wide strategies are already available to reduce the incidence of the second leading
cause of cancer mortality.
The fundamental premise of epidemiology is to estimate the population average risk of disease.
Risk is a population measure, not an individual measure. Epidemiology does not estimate
individual risk, nor does it perfectly predict individual likelihood of disease. As noted by Rose,
epidemiology does not describe why an individual case of cancer arises in the population, but
rather what the causes of incidence in the population are [88].
The high-risk approach to prevention aims to identify those most at risk of disease and avoid
the apparent wastefulness of mass prevention strategies, which are characterized by large societal
benefits though little individual gain. However, population-level changes shift the underlying
risk. The melanoma prevention efforts in Australia discussed previously illustrate the benefits
of population-wide strategies. Exposure to solar radiation is accepted as the major environmental
cause of melanoma. Population-wide strategies to reduce sun exposure have been implemented
in Australia, the country with the highest incidence of melanoma in the world.
Does knowledge of phenotypic risk factors change the prevention messages? For melanoma, can
we recommend that only a subset of the population avoid excess sun exposure? Estimates by English
and Armstrong based on Australian data suggest that 54 per cent of melanoma occurs in 16 per cent
of the population, who might therefore be suitable for more intensive surveillance. However, to
exclude the low risk segment of the population from prevention messages or strategies would
eliminate the potential for prevention of 46 per cent of cases. These estimates of the proportion
of disease arising from those with epidemiologic risk factors is consistent with seminal writing by
Wald et al. showing that risk factors are poor markers for identification of sub-populations for
prevention [89]. Hence as Rose noted, prevention strategies must be widespread.
In contrast with the high-risk approach that will be tailored to each malignancy one at a time,
population-wide strategies that have benefits across multiple chronic conditions, such as smoking
cessation, increase in physical activity, avoiding weight gain and improving diet, will have far
CANCER PREVENTION: FUTURE DIRECTIONS
greater public health benefit. For example increasing physical activity will also reduce the burden
of type II diabetes, coronary heart disease, and stroke.
To eliminate large portions of the burden of cancer we typically do not need refined understanding of molecular pathways. Recommendations to stop smoking were made long before the
molecular pathways from tobacco to lung cancer were described. Based on the evidence from
seven prospective studies available in 1964, the Report of Surgeon General Luther Terry concluded that smoking causes lung cancer in men and recommended that men stop smoking.
Subsequent to the 1964 report of the Surgeon General there have been widespread changes
in patterns of smoking and ultimately changes in lung cancer incidence. The incidence of lung
cancer is now falling [90].
One might well ask, How will refined understanding of molecular pathways to malignancy
help reduce the population burden of lung cancer? Perhaps they wont, but rather they may
identify strategies for chemoprevention among former smokers, or treatment options. Perhaps
greater effort should be made for understanding and interrupting the pathway from marketing,
uptake of smoking and addiction, or modifying social norms related to supersizing sugar
sweetened beverages?
Broad campaigns can be effective, as the melanoma prevention programme in Australia has
demonstrated, and data from California noted earlier in this chapter attest to the impact of the
increases in tobacco tax and anti-tobacco education campaigns to prevent smoking. Since
smoking causes cancer at many organ sites, shifting the whole population distribution will have
a greater impact on cancer burden than trying to identify a subset of susceptible individuals that
is at sufficiently high risk (yet are a large enough subset of the population) to account for a
substantial portion of the disease burden.
Balancing strategies across provider services and actions, regulatory changes that will reduce
exposures and reinforce cancer reducing behaviour changes, and strategies targeted to communities and individuals remains a high priority as we plan and implement active prevention programmes to reduce the burden of cancer.
Cancer prevention: future directions

While for non-smokers population-wide approaches to increase physical activity and prevent
weight gain (or achieve weight loss) offer the greatest benefits and major challenges for cancer
prevention going forward, advancing technology must also be considered. As vaccines such as the
HPV vaccine are developed can they be effectively delivered to the women (or adolescents) at
highest risk for cervical cancer, i.e. in countries with limited health resources?
Can physical activity and weight control compete with the drive for development, fast food,
and a Western lifestyle? Can tobacco control compete effectively with these same marketing
forces? Evidence shows that tobacco control can be successful, with sufficient political will to
allocate adequate resources and establish necessary regulatory changes to complement health care
provider and individual level changes.
These are challenges in the field that the recently launched World Cancer Declaration (WCD)
(www.uicc.org/wcd) sets forth as priorities for the global cancer community. Priorities for the
WCD include health policy placing cancer on the agenda; cancer prevention and early detection
priorities that address tobacco, reduction in exposure to environmental carcinogens, and increased
access to vaccines. In the research setting, better defining the achievable changes in exposure will
lead to more realistic estimates of the proportion of cancer that is preventable through active
cancer prevention programmes. A refined understanding of natural history of cancers and the
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38
carcinogenic process for each cancer site will improve our ability to target prevention strategies
appropriately during the life course.
Advances that refine classification of cancer and perhaps offer new prevention pathways may
offer new prevention strategies for specific subsets of cancer. If such an approach is successful for
say oestrogen receptor negative breast cancer that impacts a relatively small number of women,
how will we identify those at high risk? How will this risk reduction strategy that is more focused
on prevention of subsets of cancer be communicated to the population, to health care providers,
and to policy setting bodies? Already the potential for selective oestrogen receptor modulators
(such as Tamoxifen and Raloxifene) to prevent a substantial portion of postmenopausal breast
cancer is exciting, particularly as the global burden will continue to rise with changing reproductive patterns in Asia [4]. Such chemopreventive agents have risks in addition to the benefits
of reduced cancer incidence. Quantifying risks of therapies is always somewhat limited as studies
are powered to quantify benefits, not risks. New and improved approaches to identifying and
quantifying risks, and subsets of the population who may be at particular risk, will help refine
approaches to balancing risk benefit trade-offs.
The use of genome-wide scans for common cancers to identify polymorphisms that may contribute to the aetiology of cancers may be added to lifestyle factors to improve risk classification
[91], and targeting of prevention strategies. However, this is far from simple as the genetic markers do not yet discriminate between those who do and do not get cancer [92].
Conclusion
More than half of the seven million deaths from cancer worldwide are caused by one of the key
potentially modifiable risk factors described in this Chapter. Using evidence-based strategies to
impact individual and population behaviour changes, public health efforts driven by sound
knowledge, legislative support/backing, and social commitment have the potential to rapidly
reduce the cancer incidence and mortality in the twenty-first century. Our aging population and
the burden of cancer that comes due to aging demands we act now to achieve this global benefit.
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Chapter 3
Achieving behavioural changes in

individuals and populations
David Hill, Helen Dixon1
In this chapter, we consider how behavioural theory and research can be translated into successful
cancer prevention programmes. Such programmes may be applied at the individual, group, community or national level. The agenda for behavioural interventions in cancer prevention is set by
rigorous epidemiological analysis. The ultimate goal of behavioural interventions is to enable
individuals to reduce their cancer risk by engaging in recommended preventive behaviours. To
reach this goal, a thorough analysis of factors underpinning the behaviour in question is needed
to identify possible targets for intervention. This foundation can be strengthened by consideration of key psychological principles known to be important drivers of health-related behaviour.
In this chapter, we present the Big Five Principles of Behaviour Change and suggest how they may
be applied to promoting and evaluating change in cancer preventive behaviour. These principles
draw upon a wide spectrum of behavioural research and theory, not just in the health field. They
could be used to guide culture-specific programmes in any country. The principles considered are
listed in Table 3.1. Research applications of these principles are reviewed together with overarching strategies for successful implementation of cancer prevention programmes. The Big Five
Principles are a convenient shorthand, and could be used by cancer prevention planners as a
checklist to assist in developing strategies that all at once push as many as possible of the effective
levers for behaviour change.
Introduction
The scope of this chapter is cancer-related behaviour, by which we mean any behaviour, which
increases or decreases the probability of occurrence, or effects of, cancer in oneself or in those
for whom one has responsibility such as patients, pupils, employees, family, or electors. Hence,
cancer-related behaviours include smoking, sunbathing, drinking alcohol, exercise, dietary
behaviour, having a mammogram, Pap test or faecal occult blood test (FOBT), being vaccinated
for hepatitis or human papillomavirus (HPV), seeking treatment or advice (including for palliation). Cancer-related behaviours also include all those professional behaviours that impact upon
the above teaching, advising, referring, recruiting, as well as examining, prescribing, inserting,
cutting, irradiating, injecting, and so on.
There is quite bewildering literature covering attempts by authorities such as public health
departments, non-government organizations, and cancer centres to get people to change their
David J. Hill, AO, PhD, Director, Cancer Council Victoria, Carlton, Victoria, Australia; President (2008
2010) International Union Against Cancer (UICC); and Helen Dixon, PhD, Senior Research Fellow,
Centre for Behavioural Research in Cancer, Cancer Council Victoria, Carlton, Victoria, Australia.
44
ACHIEVING BEHAVIOURAL CHANGES IN INDIVIDUALS AND POPULATIONS
Table 3.1 The Big Five Principles of Behaviour Change: MMCRR

Motivation
Modelling
Capacity (resources available and self-efficacy)
Remembering
Reinforcement
cancer-related behaviour, i.e. behaviour to reduce their own or someone elses risk of developing
or succumbing to cancer. This literature is part of a broader literature on health promotion covering a host of diseases.
The evidence base to guide cancer prevention practitioners is far less definitive than it is,
for instance, for the practitioner managing hypertension in a patient. Systematic reviews are
relatively few, and those to be found may be of little use to a practitioner charged with designing
a prevention programme for a local population.
Meta-analyses of research data have validity only when the measures aggregated across
different studies are sufficiently comparable; the intervention is the same (or similar enough);
measures of effect are the same; and the host organism is functionally equivalent. Usually none of
these conditions apply when health behaviour interventions are combined in systematic reviews/
meta-analyses. To make matters worse, the applicability for health behaviour interventions of the
presumed gold standard of scientific evidence, the randomized controlled trial has now been
seriously questioned [1].
Health behaviour interventions are designed to affect Homo sapiens, a species which thinks,
feels, and acts in ways that are largely determined by learning histories that are individual- and
culture-specific. To achieve the same results as found in a researched population requires that the
population in which those results are applied be functionally equivalent. This is often not the
case in the way that, for instance, the respiratory systems of Asians, Africans, and Caucasians are
functionally equivalent.
Accessible standard resources are of less value to the prevention practitioner than they are to the
clinician dealing with specific clinical problems. In this chapter we therefore offer a set of working
principles upon which to base interventions. The approach is thus principle-based rather than
evidence-based in the usual sense. However, we assert that these principles are underpinned by
more than a century of behavioural science research and theory, and that the literature on cancerrelated behaviour change includes many examples of their successful application. The prevention
practitioner should be as committed to using an evidence base as should the clinical practitioner.
The difference is that the prevention practitioner needs to be involved in building, as well as applying the evidence base for their programmes, in order to achieve continuous improvement in outcomes. This has significant implications for establishing the skill sets required to implement the
most effective behaviour change programmes, as we discuss later in this chapter.
In identifying the Big Five Principles of Behaviour Change we acknowledge that there may be
additional principles that would add value. That is for others to argue. In the meantime, we offer
the principles in the belief that they cover a very large part of the field of opportunity for catalysing benign behaviour change in others. We believe that the brevity of the list and the simplicity of
the principles give them a utility for the practitioner that might be compromised by a more
extended or elaborate articulation. They can be easily brought to mind by the acronym MMCRR
(Motivation, Modelling, Capacity, Remembering, Reinforcement).
SHAPING BEHAVIOUR: BIG FIVE PRINCIPLES OF BEHAVIOUR CHANGE
Where to focus
In focussing on the individual, we do not mean to imply that underlying (upstream, primordial) factors are irrelevant. Indeed, there is ample evidence that educational, economic, and
social disadvantage are strongly associated with risk factors for cancer [2,3] (see Chapter 2 also).
There is also good reason to believe that making an impact on disadvantage would reduce cancer
risk in affected populations [4]. We do not see that individual and societal explanations are at
odds with each other. We do not see any necessary contest between the sociological and the psychological perspectives. On the contrary, we contend that upstream factors ultimately find expression in the behaviour of individuals, and that trends among populations and sub-populations are,
after all, the aggregation of many individuals actions. Hence, we believe that opportunities to
understand and improve the health of populations are foregone when analysis and intervention
at the individual level is neglected. As we discuss later, upstream factors are more complex, distant
in time, and difficult for the health sector to influence but they do involve broad social agendas
that extend beyond health. There are consequently opportunities to develop alliances in which
changing cancer-related behaviour is one among several societal benefits of upstream
interventions.
Shaping behaviour: Big Five Principles of Behaviour Change

Our articulation of the Big Five was stimulated by requests from practitioners and research colleagues for a succinct statement of what is really known about health behaviour change. They
wanted an answer that did not lose them in detail, but one which would provide a sound and
reliable guide. These principles draw upon a wide spectrum of behavioural research and theory,
not just in the health field. They represent a distillation of key concepts derived from social cognitive theory [5], the theory of planned behaviour [6], the precede-proceed model [7], the health
belief model [8], basic learning theory [9], and our own practical experience. Readers will
recognize them all.
The basic proposition of this model is that repeated or habitual voluntary behaviours are
determined by the extent to which a person:
wants to do it (conscious motivation)
sees others doing it (modelling)
has the required capacity to do it (resources, comprehension, training, and self-efficacy)
remembers to do it (memory and prompting)
is rewarded for doing it, or suffers for not doing it (positive and negative reinforcement)
Any programme to change a cancer-related behaviour would be highly successful if it could

maximize the operation of all the Big Five Principles simultaneously. In the next section we
articulate these principles and present examples of their application in a variety of cancer prevention settings. In practice, cancer prevention efforts have tended to utilize only a subset of these
principles within particular programmes, often because in certain settings some of the principles
that would be effective are judged to be impractical, unacceptable, or too expensive.
1. Motivation
Motivation is the most elusive concept in psychology and it has to do with why we do the things
we do. Reasons for self-initiated behaviour do not have to be logical in any objective sense, so the
fact that a person continues smoking in the knowledge of the dangers of smoking does not invalidate this principle. People may experience motivation as wanting, needing, or desiring to put
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their energy into doing things or pursuing goals. The origins of a motive may lie in physiology
(e.g. satiation), learning (e.g. success), or perhaps genetics (inherited motives are more clearly
evident in other species, for instance, the true-to-breed behaviour of an untrained beagle when it
first encounters the scent of a hare). For our purposes it is enough to recognize that motivation is
a force, an engine that can initiate and maintain behaviour.
Health behaviour change strategies nearly always acknowledge motivation by communicating
arguments and evidence that are intended to provide personally relevant reasons, and thereby the
motivation, to do the things we cancer prevention advocates contend will prevent cancer.
There are two main points to make about motivation as a principle to use in changing cancerrelated behaviour. First, motivation is a necessary condition of volitional behaviour. However it
is often an insufficient cause of behaviour change on its own. Yet attempts to inform and reason
with our target populations dominate cancer prevention efforts, often to the neglect of other
arguably more effective principles. Second, we can do a much better job motivating our target
groups by getting inside the way they view the world. Sophisticated qualitative research
techniques [10] are being applied increasingly in cancer prevention to provide insights into the
arguments and evidence most likely to motivate culturally diverse sub-groups in society.
A group of theories known as expectancy-value theories has been found useful in creating
motivational communications for cancer prevention. Their proposition is that people anticipate
(i.e. can think ahead to) various outcomes of behaviours they contemplate engaging in, and that
such outcomes have positive or negative values for people. People are predicted to choose behaviours that they expect will reap the most success and value, and minimize negative outcomes.
Outcome expectations may take the form of physical outcomes such as the pleasurable or aversive
effects of the behaviour (e.g. if I limit my food intake, Ill feel really hungry), social reactions
evoked (e.g. if my diet helps me achieve a healthy weight, my partner will find me more attractive), and self-evaluative reactions (e.g. if I lose weight Id be healthier). Helping people see how
habit changes are in their self-interest and in line with broader goals they value highly should
enhance motivation [5]. Short-term, attainable goals help people succeed in pursuing longerterm goals by mustering and guiding current effort.
Applied to cancer prevention, influencing outcome expectancies means promoting the benefits
of performing recommended new health actions, as well as the negative consequences of persisting with the current potentially harmful health actions.
Example
We often assume that knowledge of the cancer risks associated with a given behaviour will provide
ample motivation for people to modify that behaviour. However, consideration of other possible
motives for that behaviour can yield fruitful opportunities for intervention. For example, public
education campaigns have been successful in generating awareness of the risk of skin cancer as a
consequence of excessive exposure to solar UV radiation [11,12]. However, many young people
continue to deliberately or inadvertently expose themselves to excessive UV radiation [13,14].
Clearly knowledge of health risks has not provided sufficient motivation to this group to change
their behaviour. What then might be the competing motives for their risky sun exposure behaviour? It seems that beliefs that a tan enhances physical appearance provide an important motive for
sun exposure [15]. Based on this reasoning, Mahler, Kulik, Gerrard, and Gibbons (2007) conducted an innovative, appearance-based intervention where they exposed young adults to UV
photographs of sun-related skin damage to their own skin and a video of photoaging information
(e.g. wrinkles and age spots). Both interventions showed evidence of less skin darkening at postsummer follow up, and those in the photoaging information condition also reported more sun protective behaviour and still showed less skin darkening one year after the intervention [16]. This study
illustrates the importance of carefully considering a target populations motives for cancer-related
behaviour, without assuming their primary motives centre around health concerns.
2. Modelling
Every parent knows that children can learn a particular behaviour by watching someone doing
it and imitating. We learn how to do things by observation and, when we see that the behaviour
is engaged in by someone we admire and/or the modelled behaviour leads to some desired outcome, we want to do it too. The concept of modelling is central to Social Cognitive Theory [5].
Applied to cancer prevention, this means providing target audiences with perceptions of models
performing recommended behaviours. This should help the audience to acquire recommended
behaviours and ultimately perform them in relevant situations. Using models who are admired
and trusted and illustrating positive outcomes of the behaviour should be most effective.
Modelling may occur face-to-face by observing others in the immediate social environment
(e.g. a teacher) or symbolically via mass media (e.g. television) [17].
An advantage of modelling health behaviour through mass media is that larger audiences can
be reached with carefully selected and portrayed models at less cost per capita than using faceto-face methods of communication. The drawback is that mass media is by definition a shotgun
approach, such that individual tailoring of the modelling situation is not possible as with other
more direct methods of communication. Nonetheless, skilful media placement helps reach
certain target groups relatively efficiently. As discussed later in this chapter, mass media,
especially television, provide scope to utilize all of the Big Five Principles in promoting cancerpreventive behaviour.
Example
In a study to increase sun protection behaviour at community swimming pools in Virginia, USA,
lifeguards were trained to model sun protection by wearing hats, protective clothing and sunscreen, and by using shaded areas at the pool site throughout the study [18]. Lifeguards received
three hours training and practice in sun protection, including how to initiate conversations
supporting sun protection and how to help others engage in these behaviours. Although it was
not possible to isolate the specific effects of modelling from other intervention components such
as information and resource provision, the intervention produced objective improvements in
child and adult sun-protection behaviours.
3. Capacity objective and subjective resourcing

It is self-evident that no behaviour can occur without the capacity to enact it. Capacity has two
components, one of which is objective, the other subjective. Both are necessary and neither alone
is sufficient for behaviour change.
Objective capacity
The objective component of capacity refers to the availability of physical resources to enable
health behaviour, such as fruit and vegetables for healthy eating, or shade structures for sun protection. It is no use promoting a particular health-related behaviour, if people do not have the
necessary resources and environmental supports to enable action. Ecological models emphasize
how the physical and social environment can influence health [19]. Models of individual health
behaviour also consider how access to physical resources can help or hinder peoples health
actions [e.g. 5,7]. If ecological factors play a role in a health problem, then ecology-based solutions are needed within health programme efforts. Methods for achieving environmental change
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to support health behavioural targets include legislation, policy changes, design of neighbourhoods, and provision of physical resources.
Subjective capacity
The second, subjective component of capacity is our belief that we are actually able to carry out
the required behaviour. Social Cognitive Theory [5] and the Theory of Planned Behaviour [6] cite
such self-efficacy beliefs as important determinants of health behaviour, and a vast body of
research attests to this notion [e.g. 20,21]. We form self-efficacy beliefs on the basis of our own
personal history of successful and failed attempts. To have sufficient self-efficacy for a given
health behaviour people need not only objective capacity to carry out the behaviour but also a
self-perception that they have the skills to do so. Thus, efforts to promote self-efficacy may seek
to overcome deficits in skills and confidence in performing cancer-related behaviour. If selfefficacy beliefs can be changed by education and training, the probability of sustained behaviour
change is greatly increased.
Examplesobjective capacity
The importance of resourcing, as well as educating and modelling, was borne out in an intervention to increase sun protection of patrons of a public swimming pool where sun protection items
such as sunscreen were provided to pool patrons [18, also cited in modelling example]. A recent
sun protection intervention that employed the principle of objective capacity was a cluster
randomized controlled trial that examined adolescents use of purpose-built shade in secondary
schools [22]. Observational data revealed greater student use of the newly shaded areas at intervention schools compared to full-sun areas at control schools. The finding that provision of shade
proved to be an effective, practical means of reducing adolescents exposure to solar UV radiation
was especially encouraging, since adolescents have proved to be an important yet challenging
target group to effect with educational strategies promoting sun protection.
Another example of applying the objective capacity principle to supporting health protective
behaviour comes from Reuben and colleagues (2002) cluster randomized clinical trial, which
compared the benefit of offering on-site mobile mammography in addition to an outreach
programme designed to increase mammography use by educating patients. Women offered
access to on-site mammography in addition to health education were almost twice as likely to
undergo mammography within 3 months compared to the health education only group. Offering
on-site mammography at community-based sites where older women meet proved an especially
effective method for increasing screening rates among certain ethnic and sociodemographic
subgroups of women who traditionally have low screening rates [23]. As can be seen, resourcing
was not the only principle employed by these investigators.
Example subjective capacity

A good example of applying the subjective capacity principle is a study conducted in Maryland,
USA [24]. The target group were low-income women served by the Special Supplemental
Nutrition Program for Women, Infants and Children (WIC), a group who were known to have
poor nutrition. Behaviour change principles were applied within the Transtheoretical model [25]
(which, incidentally, provides the important insight that behaviour change is a process not an
event, and is characterized by a series of stages which call for different, tailored forms of information, training, and assistance). The researchers hired women on the WIC programme as peer
leaders (which incidentally also exemplifies modelling). The peer leaders role was to raise the
self-efficacy of participants to increase fruit and vegetable consumption in their families. These
peer leaders conducted three 45-minute education sessions in small groups over six months.
Childcare was provided so women became fully involved in discussions of how to overcome
barriers to increasing fruit and vegetable consumption and to engage them in hands-on practice
in food preparation. As well as this self-efficacy-raising strategy, a number of other principles
were applied, including motivation, prompting and reinforcement. Consistent with the importance of the capacity principle, women who attended the largest number of efficacy-raising
sessions increased their servings most, and there was a significantly greater increase on the scale
to measure self-efficacy in the intervention group compared to the control group. Overall, the
intervention increased by half a serve a day, womens mean daily consumption of fruit and
vegetables.
4. Remembering
Memory refers to the storing and retention of information. Sometimes in cancer prevention
practice we have erred by overcomplicating matters and overlooking the obvious. People simply
forget to do things, particularly behaviours that are intermittent, such as screening. Prompts are
a simple solution to memory lapses and procrastination. They help bring cancer prevention
recommendations to the fore, such that target issues or behaviours to be changed are given personal priority alongside the other demands of peoples everyday lives. The health belief model [8]
argues that such cues to action remind or alert people to a potential health problem making
them more likely to take preventive action. Examples of cues to action are mass media campaigns,
a reminder postcard from a doctor, advice from others, illness of a friend or relative, newspaper
or magazine article, SMS, or email message.
Example
In an Australian study of recruitment to a publicly funded (free) mammographic screening
service, it was found that the effectiveness (and cost-effectiveness) of personal letters of invitation,
followed by a second letter to non-attenders was far greater than public recruitment strategies
such as local newspaper articles, community promotion, and promotion to physicians. Most
effective, though not most cost-effective, were letters of invitation that specified an appointment
time, followed by a second letter to initial non-attenders [26]. This suggests that the public health
potential of proactive use of population and sub-population lists is considerable.
These days, with vast numbers of people who use personal computers and have access to the
Internet or who carry mobile phones with them, there are almost limitless opportunities for
timely prompts and advice that are not location dependent. For example, a recent randomized
controlled trial used mobile phone text messaging for a smoking cessation programme [27].
Approximately 2,000 teen and adult smokers from throughout New Zealand who wanted to quit,
and owned a mobile phone, were randomized to an intervention group that received regular,
personalized text messages providing smoking cessation advice, and support, or a control group
that received periodic distraction messages. At six weeks, more participants in the intervention
had quit compared to the control group: 239 (28 per cent) versus 109 (13 per cent), relative risk
2.20. This treatment effect was consistent across subgroups defined by age, sex, income level, or
geographic location. Thus phone text messaging that is affordable, personalized, age appropriate,
and not location dependent appears to be a potentially useful method to help young smokers
to quit.
5. Reinforcement positive and negative

Reinforcement operates on the principle that behaviour is more likely to be repeated if it is positively reinforced or rewarded, and less likely to be repeated if it is unrewarded or punished.
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Reinforcing factors may act as important incentives for the persistence or repetition of cancerpreventive as well as cancer-risk behaviours. For example, use of solariums for tanning may result
in positive reinforcement at an intrinsic level (endorphin release; see [11]) and extrinsic level
(social approval of tan by peers). These positive reinforcements make the behaviour more appealing than if they were absent. Conversely, negative reinforcement at an intrinsic level (e.g. painful
sunburn) or extrinsic level (e.g. doctor tells you it will increase skin cancer risk) may discourage
the behaviour. Negative reinforcement may also increase the likelihood of a behaviour by removing a negative stimulus when the behaviour is performed. For example, nicotine craving may be
removed by smoking.
According to social cognitive theory [5] reinforcement may be direct, vicarious or self-directed.
Take for example a cancer-preventive behaviour such as exercise. A jogger who experiences
runners high (endorphin release) is receiving direct, intrinsic, positive reinforcement. If her
coach praises her running performance, this is direct, extrinsic, positive reinforcement. If she
observes high profile athletes receiving awards and recognition for their running this may provide
vicarious positive reinforcement for her running in future. She may also engage in self-directed
reinforcement contingent on her accomplishments; for example, if she jogs 10 km per day for one
month, she will reward herself with a new pair of running shoes.
Successfully applying the principle of reinforcement to cancer prevention could involve positively reinforcing recommended behaviours and/or negatively reinforcing cancer risk behaviours.
However, in the benign business of cancer control we neither have available nor would choose to
use many of the draconian reinforcement contingencies that could change the cancer-related
behaviour of populations. Yet we may still err in not giving enough attention to systematic canvassing of the opportunities to build positive reinforcement into our interventions and, just as
important, how to avoid inadvertently building in negative reinforcement.
Example
One of us once attended a workshop to devise a strategy to increase participation in cervical
screening programmes by women in at-risk categories. Workshop attendees were told that only a
quarter of women on a register of those who had already had at least one Pap test returned for
another after being reminded at three years that they were overdue for their next test. It would
seem at least three of the Big Five Principles should have been operating here. After all, women
were prompted by a letter; they knew how to engage in the behaviour because they had done it at
least once before; and their previous behaviour had presumably been positively reinforced by getting an all clear test result. But was it? Further discussion by the group revealed that the screened
women were rarely notified of their all clear result unless they took the trouble to telephone their
doctor for it which relatively few did. So the explanation for the disappointing response to recall
for the Pap test may simply be the failure to systematically apply positive reinforcement of the
desired behaviour (receiving as a reward for their behaviour an all clear letter) when a golden
opportunity existed to do so.
Heil and colleagues [28] applied the principle of positive reinforcement in a randomized
controlled trial where smokers entering prenatal care were assigned to either a contingent or
non-contingent voucher condition. The vouchers could be exchanged for retail items during
pregnancy and for 12 weeks postpartum. Women in the contingent condition earned vouchers
for biochemically verified smoking abstinence; in the non-contingent condition, women earned
vouchers independent of smoking status. The results revealed that voucher-based reinforcement
therapy contingent on smoking abstinence during pregnancy significantly increased smoking
abstinence at end-of-pregnancy (41 per cent compared to 10 per cent) and at twelve weeks postpartum (24 per cent compared to 3 per cent). Evidence from serial ultrasound examinations
PUTTING IT ALL TOGETHER: IMPLICATIONS OF BIG FIVE PRINCIPLES FOR INTERVENTIONS
indicated significantly greater estimated foetal growth in the contingent condition compared to
the non-contingent condition. As applied in this innovative intervention, the principle of positive
reinforcement yielded positive health benefits for both mothers and their unborn infants.
A good example of reinforcement delivered en masse in cancer prevention is the use of tax
increases to reduce tobacco consumption. A study on the economics of tobacco control conducted by the World Bank, in partnership with the World Health Organization, concluded that
tax increases that raise the real price of cigarettes by 10 per cent would reduce smoking by about
4 per cent in high income countries and by about 8 per cent in low income or middle income
countries [29]. The continuing smoker is negatively reinforced by costs; the quitter is positively
reinforced by savings. For example, data from smokers between 17 and 69 years old interviewed
during an annual face-to-face survey conducted by Taiwan National Health Research Institutes
between 2000 to 2003, revealed that a new tobacco tax scheme introduced in 2002, brought about
an average annual reduction in cigarette consumption of 13.27 packs/person (10.5 per cent) [30].
Recently Carpenter and Cook (2008) used data from over 800,000 youths from national, state,
and local Youth Risk Behavior Surveys to examine the effect of tobacco taxation on youth smoking in the United States. They found that the large state tobacco tax increases of the past 15 years
were associated with significant reductions in both smoking participation and frequent smoking
by youths [31].
Putting it all together: implications of Big Five Principles

for interventions
In this section, we illustrate how the Big Five Principles may be translated into the design of
interventions. We believe that the most promising approaches to behavioural change would
include as many of the Big Five Principles as possible.
Once epidemiological data has been used to identify behavioural and environmental risk
factors linked to the cancer outcomes to be addressed, the next step is to consider the attitudes,
knowledge, social norms and patterns of social and community organization that contribute to
the behavioural risk factors. This assessment will highlight possible levers for change that may be
targeted in an intervention. Where possible, draw on previous research to identify the most likely
routes to improvement. A huge amount of information about what works in interventions can
be gleaned from authoritative reviews and summaries. Learn from what has worked elsewhere
as a starting point in choosing intervention strategies.
Where this information is not available from existing sources, it may be necessary to collect
additional data pertaining to your specific target population. The Big Five will provide pointers
on what data to collect. For example, what motivates people to engage in the behaviour of interest?
Do they have capacity to perform the desired alternative behaviour (both in terms of resources
and self-efficacy)? Who would the target audience perceive to be a credible role model concerning
recommended behaviours? What factors might reinforce the risk behaviour and the recommended alternative behaviour? What do the target audience know and feel about the cancer
outcome and associated risk factors? What would be the best messages and channels through
which to prompt and remind our target audience of recommended actions? Once we have a good
understanding of our target audience and how their environment shapes their behaviour, we are
better positioned to promote changes in cancer-related behaviour.
Carcinogenic effects are usually dependent upon the cumulative frequency and amount of
exposure received in doses that in themselves are only trivially toxic or aversive (such as the
single cigarette). Therefore, it is hardly surprising that the cancer-related behaviours of most
interest in prevention are repeated or habitual ones. When we use the term behaviour change,
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we really mean the reversal or redirection of a pattern of behaviour that is the end product of an
individuals learning history.
When people use the term behaviour, closer reflection usually reveals that the behaviour they
have in mind is actually a chain of behaviours. Consider the complexity of the steps that need to
be taken between awareness of a recommendation to take a screening test and having the test
done, or purchasing and smoking a packet of cigarettes. We therefore advise doing a searching
and reflective analysis of the target cancer-related behaviour it is intended to influence.
When analysing a given cancer-related behaviour, it is nearly always helpful to ask the questions; is this a habitual, contingent, or one-off behaviour? What is preventing the person who is
our target from doing what we recommend? Why exactly did or would the person act this way?
Can the behaviour be broken down into parts, i.e. is the behaviour actually a chain of behaviours?
Are there links in the chain that lend themselves to intervention? Can any of the Big Five Principles
be introduced at critical links in the chain? Can unfavourable upstream factors be offset through
targeted interventions at an individual level (e.g. are there ways to neutralize educational or social
disadvantage for the particular behaviour)?
Creating a problem-specific conceptual model

Kurt Lewin (1952, p. 169) famously wrote, There is nothing more practical than a good theory
[32]. A theory lays out the causal pathways to explain and predict phenomena in nature. In our
work, we have found it useful to articulate during the planning process our own theories to
explain the cancer-related behaviours of interest. Doing so will test your assumptions and logic.
Any such theory gives pointers to where to intervene to change the behaviour. Your theory can
draw upon extant formal theories, such as those introduced above but it should not be overwhelmed by them. It will be more fine-grained, but more likely to be of use to you. The importance of this exercise is to force you to articulate what leads to what, and why. This will guide the
crafting of the intervention and help structure the evaluation of it in the field.
For example, early in the development of a skin cancer prevention programme in Australia, we
developed a conceptual model illustrating factors known to influence individual risk of skin
cancer (Figure 3.1) [33]. It provides a useful framework for measurement and explanation of
sun-related behaviour, as it accounts for intra-personal factors as well as variations in the physical
environment in which the behaviour of interest occurs.
The model also draws attention to which factors may be amenable to intervention or not. For
instance, if seeking to change the environment to reduce peoples risk of solar UV exposure, the
physical environment (e.g. availability of shade) can be readily modified, but the solar UV levels in
a particular climate cannot. At the level of individual risk factors, physical characteristics such as
having a skin type that sunburns easily may not be alterable, but personal sun protection behaviours provide a more achievable means for people to reduce their risk of exposure. This in turn
highlights the importance of considering which predispositions drive sun protection behaviour
and whether these also provide suitable targets for intervention. For instance, a number of studies
have found that pro-tan attitudes are associated with poor sun protection behaviour [15].
Once factors that are potentially amenable to intervention are identified, the relative importance of each of these factors in influencing cancer risk should be considered, to determine where
intervention efforts are best concentrated. For example, multivariate analysis of predictors of sun
protection behaviour for a given population might suggest that tanning norms and activity
demands are much more strongly associated with sun protection behaviour than knowledge
of skin cancer risk (which was found to be universally high), such that the former are more
promising targets for health promotion intervention. In many cases, it will be necessary to collect
Predispositions
Skin cancer
Social norm
Physical
environment,
resources
Behavioural
causes
Non-behavioural
causes
Activity demands
Weather
(temperature,
cloud cover)
Genetic
(e.g. skin type)
UVR
Fig. 3.1 Behavioural factors in causation of skin cancer.

From: Hill et al. 1998, p.63 [33], with permission.
and analyse local data from the specific target population to inform this process. While
drawing on prior research with different populations is usually helpful, it may not necessarily be
generalizable. Subjecting your model to real-world testing will also help determine whether your
model includes unimportant factors, or whether there are further factors that need to be added to
the model. In this formative stage of research, qualitative methods (see [10]) such as focus groups
may complement quantitative, population-based surveys.
Developing and testing a problem-specific model can also provide insight into the most
promising settings through which to reach target groups for intervention. For example, Hill and
colleagues (1992) assessment of behavioural and non-behavioural factors in sunburn found that
people who engage in water sports are a high-risk group for excessive sun exposure [34]. This
finding suggested that targeting people in these sports settings would be useful for skin cancer
prevention.
Developing interventions that fit the target population

Carefully establishing an evidence base for explaining behavioural risk factors for a given cancer
provides a firm foundation on which to build intervention efforts. From this foundation, health
promotion planners are in a position to creatively consider how the Big Five Principles can be
used as a toolbox to bring about the change they seek.
Table 3.2 illustrates application of the Big Five Principles in various cancer prevention contexts.
The Table exemplifies the manner in which the Big Five Principles may be applied to promoting
change in a diverse range of cancer-related behaviours. This includes the potential to influence
peoples behaviour through law, education, and social marketing. The Big Five Principles operate
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Table 3.2 Examples of application of the Big Five Principles to cancer prevention programmes
Principles
Prevention
Screening
e.g. solar protection, smoking cessation e.g. cervical cancer screening, bowel
cancer screening
Motivation
Provide rationale
for the target
behaviour.
Present target group with arguments &

evidence to support cancer-preventive
behaviour. For example, graphic
television commercial (TVC) illustrating
importance of cumulative solar UV
exposure to skin cancer risk; ad campaign
promoting smoke free environments
presents health risks to smokers & to
children exposed to passive smoking.
Modelling
Provide perceptions
of role models
demonstrating
recommended
behaviours.
Encourage prominent & admired role

models to demonstrate recommended
behaviours in relevant settings. For
example, solar protection programme
sponsorship of lifeguards association
ensured that lifeguards modelled sun
protective behaviour at pools/beaches
where both participants & spectators
risk skin damage from excessive sun
exposure.
Present target group with arguments &

evidence to support screening practice.
For example, letter of invitation for free
FOBT presents national incidence &
mortality from bowel cancer, e.g. TVC
aimed to encourage under-screened
women to have a Pap test conveyed that
whilst a Pap test can cause discomfort &
embarrassment, the consequences of
Use arguments & evidence that resonate not having one could be far worse.
with target audiences view of the world.
For example, anti-smoking TVC that
presents emotional as well as physical
risks of smoking, such as what a child
who loses a parent to tobacco-related
cancer will miss out on.
Provide target group with perceptions of
role models initiating & participating in
recommended screening behaviour. For
example, mass media campaign
modelled women making & attending an
appointment for a Pap test (did not
show test being undertaken).
Symbolically model recommended

behaviours via mass media. For example,
TVC and brochure photographs
modelling a smoker telephoning a
smoking cessation hotline & engaging
in discussion with smoking cessation
counsellor.
Capacity ~
Objective
Provide
opportunities &
support for
recommended
behaviours.
Legislation to support cancer-preventive

behaviour. For example, tax rebates
allowing outdoor workers to claim
expenses for sun protective clothing.
Legislation to inhibit cancer-risk
behaviour. For example, legislation to
prohibit tobacco & cigarette advertising;
bans on smoking in public settings such
as restaurants & workplaces.
Policies in organizations such as schools,
workplaces, & sports clubs that support
recommended behaviours. For example,
encourage schools to develop &
implement a sun protection policy that
includes compulsory hat wearing for
Government establishment of cancer

screening registry. For example, Pap test
register enables womens participation
in cervical screening to be centrally
recorded & reminder letters to be
sent out to women whose Pap tests
are overdue.
Policy that provides consensus
guidelines on who should be screened &
how often. For example, policy
specifying that routine cervical screening
with Pap smears should be carried out
every two years for women with no
symptoms or history suggestive of
cervical pathology.
Table 3.2 (Continued) Examples of application of the Big Five Principles to cancer prevention
programmes
Principles
Prevention
Screening
cancer screening
children playing outside during peak UV
seasons, scheduling outdoor activity to
times furthest from solar noon, &
inclusion of sun protection in the
curriculum.
Resources that promote or enable
recommended behaviours made available
& accessible. For example, standards set
for protection level of sunscreen, tax on
sunscreen lowered & restrictions on sales
outside pharmacies removed; e.g.
provision of smoking cessation phone
counselling service for the cost of a local
phone call.
Capacity ~
Subjective
Promote mastery
learning through
skills training.
Educate target group about

recommended behaviours. For example,
Slip!Slop!Slap! ads demonstrated sun
protection behaviours in a fun &
empowering way.
Build skills training into interventions.
For example, smoking cessation phone
counsellors provide personalized advice
& support to enable smokers seeking
to quit to realize their goal & deal with
setbacks.
Subsidize cost of eligible people

participating in screening. For example,
provision of FOBT test kit via mail-out
to consumers.
Provide financial support to health
service providers who perform tests. For
example, rebates to GPs & nurses for Pap
tests; financial support for attending
training.
Provide & support training for health/

medical undergraduates & professionals
who will be performing screening tests.
For example, workshops & on-line
learning for GPs to promote competence
in identifying patients eligible for bowel
screening, understanding FOBT efficacy
& procedure, following up patients with
positive results.
Establish & monitor professional

standards for performing, analysing &
reporting on screening test results. For
Break skills training into manageable
example, college of nursing requiring
steps. For example, smoking cessation
Pap test nurses to gain professional
counsellors teach people stage-based
credentials in Pap testing &
tactics to enable them to do well in a
quit attempt, such as setting a quit date, re-establishing those credentials
every 3 years.
putting plans in place to make a quit
attempt more successful.
In communication campaigns, seek to
build skills & confidence of target group
in initiating, attending & undertaking
screening test. For example, instruction
booklet illustrating steps to collecting
a faecal sample sent to consumers
with free FOBT test kit. For example,
cervical cancer screening programme
advertisements (newspapers, cinema,
outdoor, health promotion within health
services) aimed to provide reassurance
to women: although test uncomfortable,
it should be quick; taking test wont
compromise privacy.
(Continued)
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Table 3.2 (Continued) Examples of application of the Big Five Principles to cancer prevention
programmes
Principles
Prevention
Screening
cancer screening
Remembering
Make people aware
or conscious of
the need to act
remind & prompt
them.
Help target audience keep recommended

behaviour top of mind, especially at
relevant settings and times. For example,
signs with sun protection symbols at
outdoor pools. For example, PR activity
on New Years Eve, encouraging those
considering quitting to make it a
New Years Resolution.
Disseminate prompts to reach target
groups en masse using communication
channels they already access. For
example, SMS or e-mail prompts with
smoking cessation advice to striving
quitters; TV, radio, print & outdoor
smoking cessation advertising.
Reinforcement
Positively reinforce
(reward) cancerpreventive
behaviour;
negatively
reinforce
cancer-risk
behaviour.
Communicate positive consequences

of preventive action, or negative
consequences of failing to act. For
example, advertisement showing
celebrity smoker in their heyday, then
later in life bearing severe negative
health effects of smoking.
Promote self-initiated rewards &
incentives. For example, printed
resource highlighting financial savings
of becoming a non-smoker, & illustrating
appealing entertainment & leisure
items (holidays, CDs etc.) that
ex-smokers can buy with money
instead of cigarettes.
Expectancies present outcomes of
change that have functional meaning
to the target group. For example,
No hat, no play rule for children
in outdoor education or childcare
settings.
Cultivate physical and social environments
that act as incentives for cancer-preventive
behaviour. For example, smoke free areas
such as prominent sporting venues, or
restaurants mean smoking is negatively
reinforced, in that you cant participate in
those settings if you smoke; non-smoking
is positively reinforced, by being able to
participate in the setting.
Reach target audience with calls to

screening action using communication
channels that will reach unaware as
well as aware consumers. For example,
invitation letters to undertake free FOBT
sent to older adults in specified age
groups.
Help target audience keep recommended
screening behaviour top of mind,
especially in relevant settings. For
example, work with GPs to encourage
them to remind & alert under-screened
women to have Pap test.
Communicate positive consequences

of undertaking screening, or negative
consequences of failing to screen. For
example, letter advising people their
bowel screening test result is all clear
(positive reinforcement). For example,
advertisement featuring a case study
of a woman who didnt screen & had
cervical cancer & infertility (negative
reinforcement).
Build incentives into programmes. For
example, incentive payments for GPs
who administer Pap tests to previously
un/under-screened women.
to varying extents within each of these approaches, but are probably best captured by social
marketing methods. Social marketing focuses on consumers needs and desires, and thus calls for
research with target groups to inform and evaluate programme efforts. It attempts to change and
maintain voluntary behaviour of target market members by offering them benefits from and
minimization of barriers to performing desired health behaviour [35]. Social marketing offers a
set of procedures for promoting change in cancer-related behaviours that incorporates many of
the Big Five Principles. Its concepts and practices can be used to improve local and national
cancer-prevention programmes, and programmes with varying resources. (For details on applying social marketing to health behaviour and health education, see [36,37]).
Key elements of social marketing practice applied to cancer prevention are to:
Sell the product (i.e. promote the benefits to consumers of engaging in cancer preventive
behaviours, and of reduced cancer risk (consider benefits beyond health benefits too); tailor
cancer-related products and services to maximize delivery of desired benefits to the target
group)
Use price to effect behaviour (reduce barriers or economic, psychological, social, or environmental costs of carrying out prescribed behaviours)
Place marketing efforts effectively (i.e. use limited resources to reach target audiences with
cancer-prevention efforts as frequently as possible and in as close proximity as possible to
when the prescribed behaviour will occur)
Promote costs and benefits to consumer (i.e. inform and persuade target audience about
the costs of cancer-risk behaviour and the personal benefits of cancer-preventive behaviour
using a range of promotional elements, such as advertising, public relations, direct mail, and
point-of-sale promotions).
Mass media
A noticeable feature of Table 3.2 is that mass media, in particular television, have the capacity to
cut across most if not all of the Big Five Principles, rendering mass media campaigns a useful
centrepiece to cancer prevention efforts. In terms of capacity, the media environment can be
structured to support cancer-preventive behaviour (e.g. prohibiting mass media tobacco advertising). Mass media advertising can promote access points where people can obtain resources and
skills, it can model cancer-preventive behaviour, it can motivate by presenting arguments and
evidence, it can remind and prompt, and it can vicariously reinforce recommended behaviours.
At the individual level, measured by percentage change in target behaviour, mass media cannot
compete with interventions that build on one-to-one contact with well-resourced professionals.
But it has been shown to be an efficient means of changing smoking, diet, and sun-related
behaviour at the whole of population level [12,38,39,40]. In Australia for instance, sophisticated
multivariate analysis showed the independent significant contributions of mass media to reductions in smoking [38]. The authors concluded that increases in the real price of cigarettes and
tobacco control mass media campaigns, broadcast at sufficient exposure levels and at regular
intervals, are critical for reducing population smoking prevalence.
Evaluation/monitoring methods
Evaluation enables determination of the extent to which a cancer prevention or patient support
programme has been successful in promoting the desired cancer-related behaviour change within
the target population. Carefully articulating and documenting programme objectives in
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measurable terms before embarking on interventions will guide programme activities and inform
evaluation efforts. Adapt the Big Five Principles to practice, by incorporating them into specific
programme objectives. Through careful appraisal and study, evaluation researchers compare a
programmes actual progress to prior plans, and direct interpretation of findings toward improving plans for future programme implementation. Programme activities should be evaluated at
various stages of development and implementation. Ideally there will be a continuous cycle of
planning, implementation, and evaluation of programmes.
Green and Kreuter (2005) distinguish between Formative, Process, and Impact evaluation [7].
Formative evaluation is carried out in the early stages of programme development. Qualitative
and quantitative research methods are useful at this point. Quantitative surveys may be used to
assess whether a particular demographic group would benefit from a programme, e.g. survey
results may reveal that cervical cancer screening rates are especially low among certain ethnic
groups within a community; the same survey may indicate that women across the community
have poor knowledge of the benefits of Pap testing. Focus groups might be conducted to explore
issues in depth for the target group, e.g. discussion with women in those ethnic groups might
reveal that these women are uncomfortable with the idea of visiting a male medical practitioner
for a Pap test as their community would frown on it, but that they do not have local access to
female practitioners. Based on these findings, the programme planner may decide to target cervical cancer prevention efforts at specific sub-groups of women, train and fund female practitioners
to provide screening in target communities (i.e. improve external capacity; indirectly eliminate
negative social reinforcement for seeing male doctor), and educate the target community about
the benefits of Pap screening (i.e. improve motivation). To maximize support for the programme
within the target community, intervention efforts should be tailored to meet their needs and
values. Formative research may also include pre-testing resources, messages, and concepts with
the target audience, before disseminating them. For example, the programme planner may decide
to use media to promote the programme in the target community and use focus groups to pretest some communication concepts that show a woman in the target community making an
appointment for a Pap test (i.e. principles of modelling and remembering).
Process evaluation research assesses whether particular intervention components are
operating as intended. At a minimum this includes collecting details on the number of groups
and individuals receiving programme resources or participating in programme activities. Other
processes that may be evaluated are whether programme activities conform to any regulatory
requirements, to the initial programme design, to relevant professional standards, or the expectations of the target group. Based on the findings of process evaluation, current programme
operations may be modified to address identified shortcomings. It is obvious, but sometimes
forgotten, that if outcome measures show no effect and process has not been adequately
measured, there is no way to know whether the intervention does not work or whether it was
simply not delivered.
Programme outcomes are monitored through impact evaluation research. For cancer-related
behavioural interventions, this includes monitoring population trends in the psychological or
behavioural domains where change is being sought, or testing outcomes for groups known to
have received certain programme strategies. More distal cancer outcomes such as patterns of
disease within the population can be monitored through epidemiological studies and cancer
registry surveillance. As tightly designed randomized controlled trials are not always feasible in
practice, study designs for impact evaluation often include cross-sectional surveys, experimental/
quasi-experimental studies, pre-post designs, and time trend analysis. Ideally studies should be
designed to enable determination of whether outcomes assessed are the result of the programmes
effects and not other forces.
CONCLUSION
Table 3.3 Cancer behaviour research centre examples

Centre
Website
Co-location models
Behavioral Research Center, American Cancer
Society, Atlanta, Georgia, USA
http://www.cancer.org/docroot/RES/RES_9.asp
Centre for Behavioural Research in Cancer,

The Cancer Council Victoria, Australia
http://www.cancervic.org.au/about-our-research/
our-research-centres/centre_behavioural_research_cancer
Viertel Centre for Research in Cancer Control,

Cancer Council Queensland, Australia
http://www.cancerqld.org.au/research/vcrcc/vcrcc.asp
University-based models
Centre for Behavioural Research and Program
Evaluation, University of Waterloo, Canada
http://www.cbrpe.uwaterloo.ca/eng/index.html
Centre for Health Research & Psycho-oncology, http://www.newcastle.edu.au/centre/cherp/

The University of Newcastle, Australia
Department of Health Promotion and Health
Education, Maastricht University, The
Netherlands
http://www.gvo.unimaas.nl/index_uk.htm
Health Behaviour Unit, University College

London, England
http://science.cancerresearchuk.org/research/loc/london/
university_coll/wardlej/wardlejproj?version=1
Organizational model
As in clinical cancer medicine, there is a wasteful disconnect between the availability of evidence
for effective population approaches and its widespread implementation in practice [41].
Organizational structures that co-locate prevention researchers and prevention practitioners can
be successful in addressing this problem. An early co-location model was the Centre for
Behavioural Research in Cancer at The Cancer Council Victoria [42]. Other co-location models
and university-based models have been successful in forging close connections between research
and practice; see Table 3.3. In each of these examples, the initiative and funding has come from a
major organization with a remit to deliver behaviour change programmes to the population. In
each case, the initiative has built significant new capacity through the development and support
of a behavioural research workforce. It is our view that such capacity is essential to maximize the
ongoing effectiveness of any programme to reduce cancer through behaviour change. Putting
practice into research as well as putting the research into practice necessitates close interaction
between practitioners and researchers. It is hard to apply science when there are no scientists.
Conclusion
The ultimate goal of modifying cancer-related behaviour is to help prevent cancer occurring or
preventing it from spreading if it occurs. There is no magic bullet, as the problem is complex and
people are complicated. Our purpose in this chapter has been to present a practical approach to
the identification, building, and dissemination of evidence to control cancer through behaviour
change. The Big Five Principles are levers for behavioural change that may be applied to all aspects
of cancer control from primary prevention, through to clinical practice, patient support, and endof-life issues.
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29 Jha P & Chaloupka FJ (2000). The economics of global tobacco control. BMJ, 321(7257):35861.
30 Lee JM, Hwang TC, Ye CY, & Chen SH (2004). The effect of cigarette price increase on the cigarette
consumption in Taiwan: evidence from the National Health Interview Surveys on cigarette
consumption. BMC Public Health, 4:61.
31 Carpenter C & Cook PJ (2008). Cigarette taxes and youth smoking: New evidence from national,
state, and local Youth Risk Behavior Surveys. J Health Econ, 27(2):28799.
32 Lewin K (1951). Problems of research in social psychology. In Cartwright D (ed), Field Theory In Social
Science: Selected Theoretical Papers. pp. 155169. New York, Harper & Row.
33 Hill D, Boulter J, & Dixon H (1998). Sun related behaviour of populations: determinants, trends,
and measurement. The Royal Society of New Zealand. Miscellaneous Series, 49:634.
34 Hill D, White V, Marks R, Theobald T, Borland R, & Roy C (1992). Melanoma prevention: behavioral
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35 Baranowski T, Cullen KW, Nicklas T, Thompson D, & Baranowski J (2003). Are current health
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37 Hastings G (2007). Social Marketing: Why Should the Devil have all the best tunes? Elsevier/ButterworthHeinemann, Oxford.
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61
Chapter 4
Early diagnosis and screening in

cancer control
Anthony Miller1
The relationship of screening to other cancer control strategies

The theory underlying cancer control implies strategic planning to ensure a rational, costeffective approach to prevention, early detection and screening, treatment, rehabilitation and
palliative care of cancer, in the context of the magnitude of the cancer problem, the resources
available, and the other priorities for disease control in the country. Those interventions with
demonstrated effectiveness should be promoted; those without an evidence base should not [1].
The effectiveness of screening is entirely dependent on the effectiveness of treatment for the
lesions identified by screening, and the availability of facilities for the administration of a screening test, diagnosis of the abnormalities identified and treatment for the cancer precursors or
invasive cancers identified. Without these pre-requisites, screening will not result in its desired
objective, reduction in mortality from the cancer for which screening is conducted, and, if cancer
precursors are detected, reduction in incidence of the cancer.
Screening is one component of early detection for cancer. It may seem self-evident that the
early detection of cancer by screening will result in reduction of mortality from the cancer.
However, this is not necessarily so, and it is the purpose of this chapter to try and place screening
into context, and justify the concept that it is impossible to justify screening just because a cancer
is found early, in fact cancer detection per se is not sufficient evidence that the individual has been
benefited.
Definitions
Screening is one part of early detection; the other is achieving early diagnosis through health promotion (education). The World Health Organization (WHO) [2] proposed the following
definitions:
Early diagnosis is the awareness (by the public or health professionals) of early signs and symptoms of cancer in order to facilitate diagnosis before the disease becomes advanced, thus
enabling more effective and simpler therapy.
Screening is the systematic application of a screening test in a presumably asymptomatic

population in order to identify individuals with an abnormality suggestive of a specific cancer
who require further investigation.
Anthony B. Miller, MD, FRCP, Associate Director, Research, Dalla Lana School of Public Health, University
of Toronto, Toronto, Ontario Canada.
64
EARLY DIAGNOSIS AND SCREENING IN CANCER CONTROL
Education as a part of early detection the foundation

of screening
Early detection programmes must be preceded by education, both of the public and health care
professionals, in order to increase awareness and achieve high response rates of the target
population.
Public education programmes have been one of the main approaches to the promotion of
screening, with emphasis on the belief that cancer, when diagnosed early, is far more likely to
respond to effective treatment. The early programmes, especially by the American and Canadian
Cancer Societies, emphasized the possible significance of lumps, sores, persistent indigestion or
cough, and bleeding from the bodys orifices, and the importance of seeking prompt medical
attention if any of these occur. More recently, the cancer non-government organizations have
emphasized the importance of screening tests, especially mammography.
However, that is not sufficient. Professional education of primary health care practitioners may
also be essential before a programme can be successful. This may be required at all levels of health
care organization, at primary care, at the district general hospital, and even at the tertiary care
(referral, oncology centre) level. But we are gradually beginning to understand that education as
such cannot secure the success of screening. Even though screening has to be a voluntary activity,
initiating mechanisms to ensure that those in the target group are screened, and if the test is found
to be abnormal, diagnosis and if necessary treatment follows, is essential to ensure the success of
screening within a comprehensive cancer control programme.
Determination of the rationale for screening

There are two important concepts that need to be considered before initiating a screening
programme [3]
The value of a screening test needs to be determined before it is introduced into practice. There is
a need to determine quantitatively, how much disability and how many premature deaths can
be prevented by screening. The benefits can then be set against the financial costs and the
human costs to the screenee of anxiety, discomfort, adverse effects, follow-up investigations,
and treatments so that a rational decision can be made.
Early detection of disease is not an end in itself. Screening should be concerned only with the
detection of diseases or disorders that are known to cause significant suffering, disability or
death if detected at a later stage. Identification of either trivial or untreatable conditions can
cause anxiety and waste resources with no practical outcome.
It is essential to define a strategy for the introduction of screening in order to ensure maximal
use of sometimes scarce resources. Both in the United Kingdom and Canada, for example, major
efforts went into planning the introduction of breast and colorectal screening, and in the United
Kingdom, the re-organization of screening for cancer of the cervix precursors, but far less effort
went into the re-organization of cervical screening in Canada, in spite of repeated recommendations that this should be done [46]. Such re-organization was desirable, not because the programme was failing (indeed there is good evidence that it has been at least as effective as in the
United States and Finland), but because success has been achieved by far too frequent screening,
and over-treatment of most women diagnosed with cervical cancer precursors, in spite of evidence that the majority of these lesions regress [7, 8]. Thus too much money has been expended
for a relatively unimportant cause of morbidity for the women who attend such screening. Indeed,
the self-selection for participation in cervix screening is largely of low risk women.
STRATEGIC PLANNING
Strategic planning
The World Health Organization (WHO) [9] has proposed a series of planning steps, and within
them, various activities. Although proposed for middle and low-income countries, they are worth
considering when a developed country decides to review, and strengthen, its National Cancer
Control Plan. With some modification, these steps include:
Planning step 1: where are we now?
Assess the cancer problem
Assess the evidence-base for screening
Consider alternative strategies to reach the same objectives (primary prevention or improved
treatment)
Assess the existing early detection plan and ongoing activities
Planning step 2: where do we want to be?
Define the target population for early detection of frequent cancers
Identify gaps in early detection services
Set objectives for early diagnosis and screening
Assess feasibility of screening interventions
Set priorities for screening
Planning step 3: how do we get there?
Plan procurement of key resources
Determine activities for early diagnosis and screening
Work with multi-disciplinary and multi-sectoral teams
Move from policy to implementation
Working through these steps in relation to each priority cancer site provides the basis for the
re-organization of screening and enables strategic decisions to be made to start or stop screening
for a specific site.
Resources
The resources needed for screening are human as well as technical and financial. Although some
screening tests can be self-administered, e.g. the faecal occult blood test for colorectal cancer
screening, there have to be trained people who will instruct the screenee in the details of its use (e.g.
a nurse or a family physician), and for all others, personnel have to be specially trained in the
administration of the test. The skills required are varied, ranging to the ability to conduct a speculum examination of the vagina, recognize the transformation zone, and take an adequate smear for
cervical cytology, to appropriate positioning and administration of compression for mammography.
But the need for training does not stop there, laboratory technologists need to be trained for
cervical cytology and interpreting faecal occult blood tests, radiologists for interpreting mammograms, nurse or physician endoscopists for flexible sigmoidoscopy, etc. The approach needed for
reading screening mammograms is very different from that required to read diagnostic mammograms, and these skills can only readily be acquired by attending special training courses, something a qualified clinical radiologist may sometimes resist. Wherever possible, there is a great deal
to be said for training a group of health care workers to administer specific screening tests, rather
than leaving the task to the generalist. Nurses can be trained to perform excellent screening breast
65
66
examinations [10], preferably following a defined protocol [11]. Nurses can be trained to perform
endoscopy, and were successfully used for this purpose in a large US screening trial, with video
cameras used as training devices [12]. We learnt long ago that cytotechnologists, specially trained
to read cervical smears, will perform as well if not better than cytopathologists, providing the laboratory is of adequate size with adequate staffing to examine at least 25,000 smears a year, incorporating appropriate quality controls [4]. It seems likely that we have not taken this process far
enough. Radiographers could perform the initial screening of mammograms, for example, and
even non-nurses, such as social workers, trained to do breast examinations. The important thing is
not the previous background of the person who will report on the screening test, it is the fact that
they receive special training to perform the required task, and that an adequate system of quality
control is put in place to ensure that high standards are maintained. [13].
The facilities required for a screening programme are dependent upon the cancer site and the
test used. These should be as accessible to the target population for screening as possible. Many
tests can be administered from the primary health care centre, advantageously, because the centre
is already likely to be familiar to the target population, and they should not need to travel far.
Even if the screening programme requires special equipment, or specially trained personnel to
administer the test, they can sometimes be brought to the primary health centre, rather than
expecting the target population to travel to a special centre or hospital. Special sessions can then
be advertised to the target population when they can come for the screening test at the primary
health centre.
Screening becomes far more complex and difficult to administer if special equipment is needed,
e.g. mammography screening for breast cancer, endoscopy screening for colorectal cancer. This is
one of the reasons why simpler tests may be selected rather than more sophisticated, though in
the case of screening for colorectal cancer it has to be accepted that currently, the evidence base is
far stronger for the simpler test, i.e. for the guaiac faecal occult blood test, rather than flexible
sigmoidoscopy or colonoscopy.
The other type of facilities required are for diagnosis of abnormalities identified by screening,
recognising that a screening test is not diagnostic; rather the test is intended to identify an abnormality that may represent a cancer precursor or an early cancer, but that other tests will be
required to make a determination of this. These facilities, depending on the cancer site, will preferably be sited in a special diagnostic centre, often at the district general hospital. These range
from special imaging, e.g. diagnostic mammography or ultrasound for breast cancer, to facilities
for open, core, or needle biopsies for breast cancer and cervix cancer precursors, to colonoscopy
for colorectal cancer. Once again, it is important that specially trained staff operate these
facilities.
It cannot be too strongly emphasized that in planning for cancer control, it is inappropriate to
introduce screening without the provision of the required trained personnel and facilities for
screening and diagnosis, and subsequent treatment of confirmed abnormalities.
The evidence-base for screening

It has become usual only to recommend interventions for cancer control that are evidencebased. However, the extent to which the evidence is sufficient, limited, or inadequate (to use the
terminology of the International Agency for Research on Cancer IARC) is often a function of
the expert group that reviewed the evidence. Therefore, some system is desirable to stratify studies
by the strength of the evidence they provide.
The US Preventive Services Task Force (USPSTF) grades its recommendations according to
one of five classifications (A, B, C, D, I) reflecting the strength of evidence and magnitude of net
benefit (benefits minus harms) [14].
STRATEGIC PLANNING
The USPSTF strongly recommends that clinicians provide (the service) to eligible patients.
The USPSTF found good evidence that [the service] improves important health outcomes and
concludes that benefits substantially outweigh harms.
The USPSTF recommends that clinicians provide (this service) to eligible patients. The
USPSTF found at least fair evidence that [the service] improves important health outcomes and
concludes that benefits outweigh harms.
The USPSTF makes no recommendation for or against routine provision of (the service).
The USPSTF found at least fair evidence that [the service] can improve health outcomes
but concludes that the balance of benefits and harms is too close to justify a general
recommendation.
The USPSTF recommends against routinely providing (the service)to asymptomatic patients.
The USPSTF found at least fair evidence that [the service] is ineffective or that harms outweigh
benefits.
The USPSTF concludes that the evidence is insufficient to recommend for or against
routinely providing (the service). Evidence that the [service] is effective is lacking, of poor
quality, or conflicting and the balance of benefits and harms cannot be determined.
The USPSTF also grades the quality of the overall evidence for a service on a 3-point scale
(good, fair, poor):
Good: Evidence includes consistent results from well-designed, well-conducted studies in

representative populations that directly assess effects on health outcomes.
Fair: Evidence is sufficient to determine effects on health outcomes, but the strength of the
evidence is limited by the number, quality, or consistency of the individual studies, generalizability to routine practice, or indirect nature of the evidence on health outcomes.
Poor: Evidence is insufficient to assess the effects on health outcomes because of limited
number or power of studies, important flaws in their design or conduct, gaps in the chain of
evidence, or lack of information on important health outcomes.
For screening, the first accepted screening approach, for cervical cancer, was based on very
indirect evidence. Indeed, initially the evidence was less than Fair, but with time, better evidence
at the population level accumulated. However, randomized trial evidence of the efficacy of
cervical cytology has never been obtained. For breast and colorectal screening, however, Good
evidence is available, as it is against screening for lung cancer by chest X-ray, but for prostate
cancer, screening was largely introduced, especially in the United States, on the basis of only Fair
evidence, and still consistent Good evidence is not available even though randomized screening
trials have been in progress for over 10 years (see discussion later in this chapter) [15,16]. In
Australia, screening for malignant melanoma of the skin has become widely used without Good
evidence, and a planned randomized trial has not been supported. This has resulted in an increase
in the incidence of superficial spreading melanoma (the lesion that tends to be readily detected
by inspection of the skin) but it is still not certain that the programme has resulted in reduction
in mortality from the disease.
In general, however, randomized screening trials are accepted as the only unbiased method to
evaluate the efficacy of screening [1719]. In spite of the fact that many commentators have
decried the high cost of such trials, and the length of time it takes for them to achieve their endpoint, no methodology of equivalent validity has yet been developed. I have set out elsewhere the
requirements for such trials, and will not repeat these here [20].
Special consideration, however, needs to be given to the evidence needed for the introduction
of new screening tests. If a test is shown to be of equivalent or superior sensitivity to a test already
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established as effective, many would regard the evidence on sensitivity alone as being sufficient to
use the new test in substitution to the old. However, there are a number of caveats. Because of the
often reciprocal relationship between sensitivity and specificity, improved sensitivity could imply
reduced specificity, and this, as pointed out many years ago by Cole and Morrison [21], will mean
increased costs to the screening programme. Further, the improved sensitivity may be spurious,
if all that was achieved was the increased detection of precursor lesions destined to regress.
Hakama et al. [22] have discussed these issues, and explained why we prefer to use the incidence
method for determination of sensitivity, and as far as possible avoid making decisions on evaluation of relative sensitivity of two tests in the same individual.
Natural history
The success of screening is dependent on an understanding of the natural history of the detectable
pre-clinical phase (DPCP), either cancer precursors as for cervix and colorectal cancer screening
or early stages of the cancer itself (as for breast cancer screening), and a recognition that this
natural history does not result in an inevitable progression between the development of the DPCP
and an invasive cancer. Rather, there may be different forms of precursors or early cancers that
may not necessarily all be on the same trajectory to cancer, nor that they progress at the same rate,
or to the same extent. It is even possible in some instances for some of the early stages to be
bypassed, or at least not be detectable, in an individual destined to develop cancer. So the demonstration that a screening test will detect a precursor, and that it can be ablated, or find an early
cancer, that can be cured, does not necessarily mean that the individual has been benefited.
There is a distribution of cancers by severity, ranging from those that progress very slowly,
if at all, to those that progress rapidly and soon metastasize and result in death. It is the rapidly
progressive cancers, or the precursors of such cancers, that we should most like to detect with
screening and subsequently cure. It could be argued that if screening finds or prevents the
emergence of the cancers that are most easy to treat, and which only result in death under circumstances of major clinical delays or failure to treat, then we shall have achieved little. Indeed,
off-setting any benefit from the detection by screening of easy to treat cancers will be the necessity
for a large number of people to be screened who in the event will not benefit at all.
Obtaining the necessary information on natural history is best done through randomized
screening trials, though cohort studies of the precursors of cancer of the cervix [7,8] combined
with case-control studies designed to determine the efficacy of screening in those screened
enabled analyses that were instrumental in demonstrating the futility of annual screening [23].
Long-term follow-up of the Mayo lung screening trial confirmed that overdiagnosis had occurred,
with no benefit, which many found difficult to accept for a cancer as malignant as lung cancer
[24]. Long follow-up of the Canadian Breast Screening trial [25] suggested overdiagnosis had
occurred from mammography screening, and also that the detection and excision of a number of
in situ cancers had had no impact upon the subsequent incidence of breast cancer, suggesting that
these lesions are not precursors in the classic sense, but just markers of risk [26]. Relatively early
during the prostate screening trials it was also recognized that overdiagnosis was substantial as
a result of PSA testing [27].
Organization of screening
Organized screening is distinguished from opportunistic screening primarily on the basis of how
invitations to screening are extended. In organized screening, invitations are issued to those at
risk in a defined target population, usually through population registers, and measures instituted
to facilitate their attendance for screening. In this context, risk is usually defined by age and sex.
WHAT SCREENING IS CURRENTLY JUSTIFIED FOR CANCER
In opportunistic screening, invitations to screening are extended to individuals when they

encounter health care providers for reasons unrelated to cancer. Opportunistic screening is
often inefficient, because many who are screened are not at high risk of cancer, many in the
population who should be screened are not, and those that do receive screening may be screened
either too frequently or too infrequently. All screening programmes require some degree
of organization to be successful, and as the extent of the organization of the various elements of
screening increases, so too does the impact of the programme. Important elements of organization include:
An identifiable target group or population, with accompanying population registers
Implementation measures available to guarantee high coverage and participation
Access to high-quality screening
Effective referral system in place for diagnosis and treatment
Measures in place to monitor and evaluate a programme [28]
What screening is currently justified for cancer

Breast screening
There is sufficient evidence from randomized screening trials (RSTs) that mammography
screening is associated with a significant reduction in deaths from breast cancer in women
age 50 to 69 [19]. However, the evidence in women age 40 to 49 was judged by IARC [19] to be
limited, the point estimate of effect being less and the reduction in breast cancer mortality nonsignificant. Since then, no new evidence has accrued on screening women age 50 or more, but for
younger women, the UK Age Trial, in which women age 39 to 41 received annual mammography
for 7 years, found a non-significant reduction in breast cancer mortality of similar order to the
IARC meta-analysis [29]. In most countries that have introduced organized mammography
screening, invitations are made every 2 years to women age 50 to 69, though in the United
Kingdom screening is offered every 3 years and in the United States, the recommendation from
most organizations is for annual mammography from the age of 40. The different recommendations on re-screening frequency represent in part different interpretations of the evidence, and
as far as the United States is concerned, a different approach to screening, where there are recommendations for screening, but no organized programmes. There has been one trial comparing
annual versus 3-yearly screening, which used indirect indicators of effectiveness as endpoints
[30]. Only marginal additional benefit was estimated from the more frequent screening.
The question as to whether mammography adds a significant benefit to screening by good
clinical breast examinations was regarded as critically important by the expert group that reviewed
the US Breast Cancer Detection Demonstrations Projects [31] but only one trial was designed
to answer this question, the Canadian National Breast Screening Study (CNBSS) (2) [25]. Even
though nearly half the breast cancers detected by screening were found by mammography alone,
the majority as expected being small and node negative, there was no reduction in breast cancer
mortality consequent on the use of mammography screening. This null result led to accusations
of poor mammography quality, but in fact the sensitivity of mammography was at least as good
as that in other trials [32]. A model-based analysis suggested that both arms (both with and without mammography) had achieved a 20 per cent or more reduction in breast cancer mortality [33].
Although these results have not influenced breast screening policy in developed countries, they
have led to attempts to evaluate the role of screening by clinical breast examination in some
developing countries [34].
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Breast self-examination (BSE) has long been advocated, but evidence that it is effective has been
difficult to obtain. Although two observational studies suggest it can contribute to breast cancer
mortality reduction [35,36], this has not been confirmed in two randomized trials, one in China
and the other in Russia [37,38]. However, it has been insufficiently appreciated that the Russian
trial, which was initiated in both St Petersburg and Moscow [39], has only reported results on the
St Petersburg component, and that component only assessed the addition of BSE teaching to
annual breast examinations, rather than the effect of BSE alone. One of the observational studies
was a case control study nested within both components of the CNBSS, where all participants
were instructed in BSE as part of their clinical breast examinations. It was the women who practiced BSE well (as judged by the examiners) who seemed to derive the benefit [37]. The other
observational study was based on the Mama programme in Finland, of which a major feature was
that women were informed of a designated radiologist to whom they could self-refer it they were
concerned over changes in their breasts [36]. This avoided the difficulties often encountered by
women who practice BSE that the primary care practitioner they see may not recognize the signs
of early breast cancer.
Mammography is a technology that has been available for decades, and although improvements in processing have occurred, resulting in better images to be interpreted by trained radiologists, these improvements seem to have resulted in improved sensitivity and specificity of the
technique, but no apparent improvement in the mortality benefit as determined by the RSTs.
This has led to interest in new technologies. Unfortunately a major trial comparing digital with
standard mammography was only able to assess relative sensitivity, as both tests were performed
in the same women [40]. Hence, although interpreted as showing better sensitivity in younger
women, this may not be true, the trial being unable to assess the effectiveness of the screens in
detecting progressive disease, for the reasons given earlier. A study of two concurrently observed
cohorts of women age 50 or more in Florence, Italy, found higher recall rates in the digital
mammography group, and higher rates of in situ cancer detection. However, there was only a
small difference in invasive cancer detection rates [41]. The other new technique, MRI, does seem
to offer advantages to younger women because of the absence of radiation, and therefore is being
advocated particularly for screening women at increased genetic risk of breast cancers [42].
An important question for cancer control is whether the breast screening programmes are
producing the expected benefits in the populations where they have been applied. This question
has been addressed by a number of before and after analyses in different populations [e.g.
43,44]. A difficulty with these analyses is that in nearly all countries, the introduction of breast
screening coincided with or followed the improvements in treatment of breast cancer that has
resulted from adjuvant chemotherapy and hormone therapy. Only a few analyses have adequately
addressed this. In one, in the United Kingdom, Blanks et al. [45] estimated that the 21 per cent
reduction in breast cancer resulted from 14 per cent reduction due to improved treatment and
7 per cent due to screening. Berry et al [46], in the United States, used a series of models to
attempt to address the same question. Although the models varied in the extent they attributed
the reduction in breast cancer mortality since 1990 to treatment or screening, on average the
conclusion was that about half the fall was due to each. This conclusion, however, was dependent
on the assumption that the increase in incidence of breast cancer that had been observed in the
United States would have been followed by an increase in mortality in the absence of screening.
That this is unlikely is suggested by the fact that much of the increase was due to the use of
mammography, while the rest, it became apparent after incidence fell, was due to the use (and
then cessation by many women) of hormone replacement therapy known to selectively increase
the incidence of good prognosis breast cancers [47]. Further, the reduction in breast cancer
mortality in the United States was exactly paralleled by a fall in Canada, whereas many of the
WHAT SCREENING IS CURRENTLY JUSTIFIED FOR CANCER
Canadian breast screening programmes did not start until after 1990. Thus in Canada and probably in the United States also most of the reduction had to be due to improved treatment, not the
screening programmes.
Colorectal screening
The only other cancer for which there is RST evidence of the effectiveness of screening is from the
use of the faecal occult blood test (FOBT). The three reported trials had different levels of efficacy,
ranging between 15 and 31 per cent reduction in colorectal cancer mortality, from 10 to 18 years
after initiation of screening [48]. The differences were in part due to lesser effectiveness of
biennial versus annual screening, directly seen in the US trial [49], but also due to rehydration of
the FOBT in the US trial, but not in the European, though both of them screened every two years
and had lower compliance than in the US trial. This evidence base has been judged to be sufficient
to initiate organized colorectal screening in the United Kingdom and many parts of Canada and
elsewhere, using a FOBT test every 2 years, though it is recognized that major efforts are needed
to ensure that diagnostic colonoscopy is available for those with positive screens. It remains to be
seen whether sufficient compliance with screening will be obtained to ensure success.
In the United States, a recent expert report has recommended screening using immunological
or DNA-based stool tests [50]. Unfortunately, this recommendation is based on the apparent
greater sensitivity of these tests than the guaiac-based FOBT, with no evidence that the increased
sensitivity will be followed by greater mortality reduction. It is conceivable that overdiagnosis will
be increased, with little improvement in efficacy.
The other screening tests under evaluation are either endoscopic- or imaging-based. Flexible
sigmoidoscopy for screening is being evaluated in trials in Europe and the United States. In the
United States, there has been an increasing tendency to use colonoscopy for screening, but no
RST of colonoscopy efficacy has been reported. In addition, virtual colonoscopy using CT scanning has been shown to be almost as sensitive to detection of polyps (the main target of endoscopy screening) as standard colonoscopy [51]. However, this still requires extensive preparation
of the bowel (a major disincentive for individuals to accept colonoscopy), and if abnormal, would
still have to be followed by diagnostic endoscopy, so it is not certain that this will prove to be an
important advance.
Although most expert groups reached the conclusion that screening was needed in addition to
primary prevention, it is still not clear that on a long term basis screening will be as cost-effective
as prevention for colorectal cancer control. This will have to be carefully evaluated over the next
decade.
Screening for cancer of the cervix uteri

Cervix cancer screening was introduced before the evaluation needs for screening was appreciated. Thus correlation type analyses [52], time sequence analyses [53], and eventually case control
studies [e.g. 54,55] were used to reach the determination that screening using the Papanicolaou
smear resulted in a reduction in both cervix cancer incidence and mortality. Modelling the understanding gained by studies of the natural history of precursors of invasive cancer [7,8,23,56]
gradually led to a recognition that three or even 5-yearly screening was effective. An IARC working group [57] concluded that there was sufficient evidence that screening by conventional cytology has reduced cervical cancer incidence and mortality rates and also concluded that screening
need not commence until age 25 and that there is no evidence that screening annually results
in much greater efficacy than 3 to 5 yearly screening. For women who have been screened and
who have never had an abnormality detected, screening can be stopped from the age of 64.
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Many programmes have now switched from the standard cytology (Pap) smear to liquid-based
cytology. An advantage of this is that the numbers of unsatisfactory smears are reduced, and also
the specimens can be used for HPV DNA testing, but there is no evidence that the efficacy
of liquid-based cytology is greater than standard cytology smears in reducing cervical cancer
incidence and mortality.
The recognition that a necessary cause of cervix cancer is infection with one of several types of
oncogenic human papillomaviruses (see Chapter 6 in this book) led to the introduction of tests
for viral DNA in cervical samples (obtained in a liquid medium), and the recognition that many
women can test positive after initiating sexual activity, but for the majority, the infection is
rapidly cleared with no long-term sequelae. However, women with persistent evidence of infection are at risk of developing precursors of invasive cancer, and cytological evidence of high-grade
lesions, usually confirmed after a diagnostic colposcopy. Although the sensitivity of the HPV test
for such lesions seems superior to cytology, it is not clear that this comprises superior sensitivity
to those lesions that are likely if untreated to progress to invasive cancer. This is now being evaluated in randomized trials comparing the application of the two forms of testing. In the interim,
the IARC working group concluded that there was sufficient evidence that testing for human
papillomavirus infection as the primary screening modality can reduce cervical incidence and
mortality rates [57].
With the introduction of HPV vaccination programmes there has been concern over the screening policy to apply to the cohorts of women who are vaccinated. As the current vaccines protect
only against infection with HPV types 16 and 18, and there is uncertainty over the degree of crossprotection against other oncogenic types, it must be assumed that vaccinated women will have
their risk of cancer of the cervix reduced, but not abolished. One approach might be to test such
women from the age of 25 at 5-year intervals for evidence of HPV infection. Those negative can
be reassured, those positive, evaluated by colposcopy. Continued surveillance probably at least to
the age of 55 would be required. In a model-based cost-effectiveness analysis, the best strategy for
girls vaccinated before age 12 years was triennial cytology with HPV test triage beginning at age
25 years and switching at age 35 years to screening every 5 years by HPV testing with cytology
triage [58]. We have recently outlined the short-, medium- and long-term requirements of
a strategy to evaluate the impact of HPV immunization and dened a framework to facilitate
planning and evaluation [59].
Cancers with uncertain evidence of screening efficacy

Prostate cancer
There are two tests currently advocated for screening for prostate cancer, the digital rectal examination (DRE) and a blood test for prostate specific antigen (PSA); for neither, until recently, was
there randomized trial evidence that prostate cancer mortality is reduced secondary to their use
in screening. However, the absence of such evidence did not prevent a number of professional
organizations, especially in the United States, including the American Cancer Society, from
recommending annual screening from the age of 50. This has led to widespread use of the PSA
test in many countries, and a dramatic increase in the incidence of prostate cancer, clearly secondary to the lead time and overdiagnosis induced by the screening. The gap between incidence and
mortality from prostate cancer is now very large (in Canada the incidence/mortality ratio is 2.6),
and although there has been a small reduction in prostate cancer mortality in the population,
which followed a small increase that accompanied the incidence increase, this is just as likely to be
due to prolongation of life by hormone therapy, with death from competing causes of death, as
due to an effect of screening.
CANCERS WITH UNCERTAIN EVIDENCE OF SCREENING EFFICACY
Two randomized trials evaluating the effect of PSA screening, the Prostate, Lung, Colon and
Ovary (PLCO) trial in the United States, and the European Randomized Study of Prostate Cancer
screening (ERSPC) in several countries of Europe, were initiated in 1993 [60,61]. Recruitment
into the PLCO trial was completed in 2001 (with 76,705 men randomized), and screening in
2006; follow-up of each participant is planned for at least 13 years. Recruitment into the ERSPC
now exceeds 200,000, and is still continuing in some countries. These trials were planned
with differences in the approaches to screening: annual in the PLCO trial, every 2 or 4 years in
the ERSPC, and with a cut-off of 4 ng/mL for a positive PSA in the United States, and 3 ng/mL
in Europe. However, it is anticipated that comparative analyses will be possible [62].
The early mortality results from both trials show there was no reduction in prostate cancer
mortality in the first seven years after randomization in the screened groups compared to the
control [15,16]. After that to ten years there was a slight difference between the trials. At ten years
in the PLCO trial, with 67 per cent of those enrolled followed, there was, if anything, higher
mortality from prostate cancer in the screened group than the control group; but the reverse was
seen in the ERSPC. No data beyond 10 years were reported for the PLCO trial. In the ERSPC, all
available data to a cut-off date of December 31, 2006 were reported, showing a difference in
deaths from prostate cancer in the screened group compared to the control (261 vs. 363) with
a rate ratio for their core age group (5569 years) of 0.80 (95 per cent confidence interval (CI)
0.670.95), and 0.85 (95 per cent CI 0.731.00) for subjects of all ages included. Nearly all the
reduction in prostate cancer deaths in the screening group was in men age 55 to 59 and 65 to 69.
In practice, the confidence intervals surrounding the point estimates of the mortality rate ratios
in the two trials overlap, so that chance cannot be excluded as an explanation for the apparent
differences between them. If the separation of the mortality curves in ERSPC is confirmed with
more data, it will still be necessary to be certain that other factors, especially treatment differences
between the groups, are not responsible for this. Indeed, Appendix 7 of the ERSPC report shows
major treatment differences that could explain their results [16]. However, it is important to note
that both trials support the recommendation of the US Preventive Services Task Force [63]
against screening men older than 69.
Draisma et al. [27] estimated from the Rotterdam component of the ERSPC that following a
single PSA screening test at age 55, the lead time was 12.3 years and overdiagnosis was 27 per cent.
Further, after a single screening test at age 75, the lead time was 6.0 years but overdiagnosis
occurred in 56 per cent of the detected cases. On average, for a screening programme at 4-year
intervals from 55 to 67, lead time is 11.2 years and overdiagnosis occurs in 48 per cent of cases.
Similar estimates have not yet been derived from the PLCO trial, but they will probably be somewhat lower, given the higher cut-off level used for determination of PSA positivity. Nevertheless,
it is clear that PSA testing results in substantial overdiagnosis, and that many men who are convinced their lives have been saved by PSA screening, even though many of them suffer from
incontinence and impotence secondary to the unnecessary prostatectomy they had, have been
deceived. This has been termed by Raffle and Gray The Popularity Paradox: The greater the
harm through overdiagnosis and overtreatment from screening, the more people there are who
believe they owe their health, or even their life, to the programme [64].
Lung cancer
A cancer for which there is good evidence of no benefit, is lung, at least using chest X-rays. Indeed
long-term follow-up of the Mayo lung trial has not only confirmed no benefit, but documented
overdiagnosis as well [24]. Nevertheless, the advent of the low dose helical computerized tomography (CT) scan has led to considerable interest in the possibility that screening will reduce lung
cancer mortality. The claims for improved survival following such screening [65] are, however,
73
74
not soundly based, as there is no comparable unscreened control group. Indeed an attempt to
compare the observed mortality in several studies with that expected, suggests little benefit [66].
Further, in many situations, the specificity of CT is so poor that a vast excess of diagnostic tests
follows screening. A large US trial is underway evaluating CT screening in comparison with chest
X-ray screening, while chest X-ray screening is also being re-evaluated in the PLCO trial [60].
There is also a European trial of CT screening underway, with unscreened controls. Fortunately
at present, no major professional organization advocates lung screening, all being prepared to
await the RST evidence that will be forthcoming.
Ovarian cancer
There are two major randomized trials evaluating screening for ovarian cancer, the PLCO and the
UK Collaborative Trial in the United Kingdom. In the PLCO trial, annual CA125 blood tests and
transvaginal ultrasound are used as first line screening tests, women with either test abnormal
being further investigated. The UK trial has three arms, no screening, annual CA125 tests with
ultrasound as the second line investigation, and annual ultrasound examination as primary
screening. The results so far show that generally these two tests detect different cancers; the stage
distribution of cancers detected by CA125 is not encouraging, as many tumours are late stage;
ultrasound may be better in detecting earlier cancers, but at the cost of many false positives,
unnecessary investigations, and oophorectomies [67,68]. Neither trial has yet reported on
mortality results. At present, there is no evidence to support screening for ovarian cancer.
Conclusions
Screening is an expensive component of cancer control, which requires great care and efficient
organization to ensure that the anticipated benefits are achieved. Screening has to be maintained,
it can have no permanent effect on cancer occurrence, in contrast to the lasting impact of primary
prevention.
Currently, screening makes a limited contribution to cancer control. In spite of some good
evidence supporting mammography screening for breast cancer in women age 50 to 69, it is still
not clear how much screening is contributing to the reduction in breast cancer mortality being
seen in many countries. Screening for cervix cancer has been effective, but currently considerable
care is needed to ensure the gains achieved are consolidated, and retained in an era with great
enthusiasm for prevention by vaccination. There is randomized trial evidence to support screening for colorectal cancer, but organized population-based programmes are in their infancy, and
their impact cannot be assessed. For no other cancer at present can screening be supported for
cancer control in technically advanced Western nations.
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77
Part 3
Applying new knowledge
Chapter 5
Integrating science with service

in cancer control: closing the gap
between discovery and delivery
Jon Kerner1
The title of this chapter, originally proposed as Moving new discoveries into practice, implied
that explicit knowledge from research (e.g. clinical trials) should influence cancer control programmes, practice, and policy. Underlying this should is the assumption that evidence-based
approaches, i.e. an intervention or policy that has resulted in improved outcomes in the context
of scientific study, when implemented in a real world setting will increase the likelihood of
improved outcomes. However, it has become increasingly clear that many in the public health,
clinical practice, and public policy communities do not hold with this assumption, and that there
are equal and often opposing forces to the dissemination and implementation of new knowledge
gained from research. These include the mass of tacit knowledge gained from practitioner and
policy-maker experience [1,2], as well as the complex service delivery and political policymaking
contextual factors that constrain the acceptance, adaptation, and implementation of innovations
based on research [3]. Thus, it has been posited that to close the gap between scientific discovery
and service delivery, if we want more evidence-based practice, we need more practice-based
evidence [4].
If we accept the premise that integrating the lessons learned from science with the lessons
learned from service (public health, clinical, and public policy) may be key to closing the gap
between discovery and delivery, then scientists, practitioners, policy makers, patients and their
families, and the public at large will need to expand their understanding of the meaning of evidence from research and reality. Moreover, the innovations that emerge from our investments
in cancer control science will need to be further evaluated through expanded investments in
dissemination and implementation science as well as programme evaluation related to cancer
control. These investments must focus more attention on the differences between the research
context in which most cancer control science is produced (e.g. in the academy, biomedical industries) and communicated (e.g. peer-reviewed publication), and the public health practice, clinical
practice, and policymaking contexts in which innovations that emerge from cancer control
science are first observed and evaluated by potential practice and policy users, before adaptation
and implementation are even, if ever, considered.
Similarly, carefully examining what evidence public health and clinical practitioners, as well as
policymakers, want to help improve the effectiveness and efficiency of the cancer control services
being provided and policies in place, or being considered in the future, is also critically important.
1
Jon F. Kerner, Ph.D. Chair, Primary Prevention Action Group, Senior Scientific Advisor for Cancer
Control and Knowledge Translation, Canadian Partnership Against Cancer, One University Avenue,
Suite 300, Toronto, Ontario M5J 2P1.
82
INTEGRATING SCIENCE WITH SERVICE IN CANCER CONTROL
Failures in understanding what evidence potential users of research want may help to explain the
well documented delay in implementing into practice what is known from research [5]. Finally,
bridging the scientific discovery, service delivery, and policy making communities may hold the
key to addressing the confusion in terminology and misunderstandings across disciplines about
the utility of research in different service and policy contexts. Each of these three broad issues will
be addressed within this chapter.
Disseminating science in cancer control and the science

of dissemination
Cancer control and its science
As reflected throughout this volume, cancer control covers a broad continuum of interventions
ranging from primary prevention of the development of cancer (e.g. tobacco control), early
detection of cancer or its precursor lesions (e.g. adenomas before they progress to invasive colorectal cancer), prompt diagnosis of the signs and/or symptoms of cancer, optimal treatment, and
supportive and palliative care. Further, cancer control emphasizes the application of new knowledge gained through research to achieve current best practice (see Chapter 1). The diversity of
genomic and proteomic factors influencing the development and spread of the disease, the
number of organ sites and physiological systems where primary tumours may first manifest
themselves, and the diversity of research and practitioner disciplines whose work may contribute
to improved outcomes (i.e. reduced cancer incidence and mortality and improved quality of life),
while not unique to cancer, may make the ubiquitous application of best practices based on
research across the cancer control continuum particularly challenging within the more general
framework of chronic disease control.
These improved outcomes relate to a growing number of measures incorporated into the goals
and objectives of national (and local) cancer control plans for which both the World Health
Organization and the International Union Against Cancer are providing guidance to government
and non-government organizations to develop and implement [6,7]. Relevant goals and objectives [8] include:
Reduced cancer incidence through:
risk reduction behaviour change,
increased practitioner delivery of cancer prevention practices, and
Earlier stage of disease at diagnosis of some cancers through:
increased awareness of, more positive attitudes towards, and use of screening services.
increased access to cancer screening services,
increased practitioner adoption of cancer screening practices, and
policy and environmental changes that support both individual behaviour and practitioner
behaviour change (e.g. increased tobacco product excise taxes and investment of these
resources to support reimbursement for clinical preventive services).
increased practitioner and patient follow-up of abnormal screening findings, as well as

signs and symptoms of cancer.
Reduced cancer-related morbidity and mortality through:
increased access to and provision of state-of-the-science cancer diagnostic and treatment

services, including participation in clinical trials particularly where conventional care
continues to prove ineffective (e.g. pancreatic cancer), and
DISSEMINATING SCIENCE IN CANCER CONTROL AND THE SCIENCE OF DISSEMINATION
Improvements in quality of life of cancer survivors:
increased access to and practitioner adoption of evidence-based cancer survivorship and

palliation interventions leading to improved quality of life of cancer survivors and those
terminally ill with cancer.
As previously noted, many different research disciplines contribute to the scientific cancer
control evidence base, made up of research data and other forms of scientific information, which
may be translated into actionable knowledge by an equally diverse set of practice and policy users.
Much of this research is conducted in, or funded by, organizations based in high income countries where cancer has received considerable public attention and funding support because it is
one of the major causes of mortality, morbidity and disease burden [9].
The multi-disciplinary scientific continuum begins with fundamental or basic research, usually
based in laboratories conducting carefully controlled in vitro or in vivo (with laboratory
animals) experiments, to explore the basic biological mechanisms for the development and
spread of cancer. Basic research is complemented by observational research in human populations including epidemiology, surveillance, and survey research tracking the natural variation
of biological, behavioural, and environmental risk factors and disease morbidity, mortality, and
the differential burden of cancer within defined human populations. Intervention research
focused on the general population, as well as cancer patients and their families, attempts to
perturb the basic biological mechanisms and/or other observed risk factor (e.g. behavioural,
environmental) and disease variation within defined populations to reduce the incidence and
mortality of the disease, and to reduce the impact of the disease on patient quality of life. Finally,
cancer health services and health policy research evaluates the utility and cost efficiency of
different intervention approaches and policies as they are applied in real world health care
and community settings.
In high income countries, the balance of cancer research investment tends to be skewed towards
basic research, followed by intervention or applied research (usually clinically focused), with
population science and health services research receiving proportionally the least amount of
financial support [10]. Figure 5.1 summarizes this relatively large commitment to basic science
and clinical research within Canada. Similarly, Figure 5.2 reflects the US government National
Institute of Healths commitment to basic science in biomedical research. This research investment gradient leads to a premium being placed on discovering and testing new and improved
technologies to control cancer (as well as other chronic diseases), relative to making it a priority
to ensure that the technologies already available and shown to be effective in controlling cancer
are delivered equitably and with high quality [11].
Another consequence of high income countries leading the way in supporting cancer research
is that many of the cancer control technologies that emerge from this basic science discovery to
intervention development process, supported by a government-industry-voluntary sector complex, are high-end technologies (e.g. Nuclear Magnetic Resonance Imaging), requiring major
capital investments and mobilization of large human, physical, and administrative resources [12].
As cancer research continues to expand into new trans-disciplinary discovery and biotechnology
development fields, the implications for the dissemination and implementation of these high-end
technological approaches to cancer control, particularly for populations experiencing large disparities in cancer incidence and mortality (e.g. low socio-economic populations within high,
middle, and low income countries) will need to be carefully evaluated from both a practice and
policy perspective. The continued failure to ensure equitable access to new technologies for
cancer control in and of itself contributes to growing cancer health disparities between the haves
and have-nots [2].
83
84
Distribution of 2006 cancer research

investment by CSO category ($390.2M)
50
40
30
20
10
%
45.2%
10.2%
1.9%
9.8%
23.3%
8.6%
1.0%
10
20
30
40
50
Biology
Etiology
Prevention
Early
(causes of (intervention) detection,
cancer)
diagnosis
&
prognosis
Treatment
Cancer
control,
survivorship
&
outcomes
Scientific
model
systems
Fig. 5.1 Distribution of Canadian investment in cancer research by topic.

From Canadian Cancer Research Alliance 2006, with permission [10].
Diffusing and disseminating cancer control science

Within the context of scientific discovery, the bulk of the communication and diffusion of cancer
research information is carried out through discipline-specific peer-reviewed journal publications and conference presentations. The mass of scientific information communicated through
peer-reviewed journal publication alone is enormous. For example, using the topic of cancer in a
PubMed [13] search produced a total of 2,171,530 listings, of which 245,839 were review articles.
Switching the search term to cancer control reduced the total number of listings to 137,617, of
which 24,527 were review articles. Given the diversity of scientific findings reported across the
cancer control continuum, the challenge of finding specific research information that can be
easily translated into actionable knowledge for practitioners or policy makers in such a large mass
of original reports or even review articles is daunting.
Communication and diffusion of scientific information have historically been relatively slow
and deliberative processes that depended on the spoken or written word. In the scientific discovery context, this process permitted the replication and re-evaluation of research results, and the
refinement of both methodological approaches to research as well as consideration and testing of
alternative theoretical explanations for study findings. In the public health and clinical practice
contexts, as well as in the public policy context, this slower pace of diffusion of information may
have provided more opportunity to deliberate about new research information, place it in applied
contexts and, as such, perhaps provided more time for new research information to be transformed into actionable knowledge. Nevertheless, the slow and deliberative pace of scientific
inquiry, trickling into practice and policy considerations, no doubt contributed to the many historical examples of delayed incorporation of evidence-based interventions into practice [14].
Since the advent and wide dissemination of modern communication technologies (e.g. the
Internet), more and more information from research is being transmitted to broader and more
Basic and applied research

60.0%
53.9%
55.2%
56.4%
55.2%
56.6%
55.2%
55.8%
52.1%
56.1%
53.0%
50.0%
43.5%
40.5%
40.0%
39.8%
39.2%
41.0%
41.0%
40.8%
3.7%
3.1%
3.1%
40.8%
38.4%
38.5%
5.2%
4.8%
30.0%
20.0%
10.0%
5.7%
5.5%
5.0%
7.0%
3.6%
0.0%
FY 1998 FY 1999 FY 2000 FY 2001 FY 2002 FY 2003 FY 2004 FY 2005 FY 2006 FY 2007
Basic research
Applied research
Other
Fig. 5.2 NIH at the Crossroads: Myths, Realities, and Strategies for the Future. Presentation by
Dr. Elias Zerhouni, Director of the National Institutes of Health (USA).
From http://www.drugabuse.gov/about/organization/nacda/powerpoint/NIHCrossroads506.
ppt#369,5,Slide 5 (accessed 24 March 2009), with permission.
diverse audiences. On the one hand, this can be viewed as a positive development towards getting
the lessons learned from science into practice. On the other hand, with less and less time to digest
the information contained therein, one unintended consequence of the explosion of research
information available through modern communication technologies is that there is a signal
to noise ratio problem, with too much information being communicated and too little time to
process the information into practice or policy contexts as knowledge that can be applied.
Given the pressure to speed new discoveries into new intervention technologies, given the
concern about the equitable distribution of cancer control knowledge to benefit all populations
that bear the burden of cancer, and given the rapidity with which discoveries are being reported
and new technologies developed from them are either prematurely adopted [15] or are seen as
superior to existing technologies that have been previously shown to be effective but are underutilized [16], there has been a growing interest in how best to manage new knowledge as it emerges
from the translation of research information into practice or policy contexts and applications.
One approach to managing the plethora of new information from research has been the systematic evidence review process. While there has been a considerable growth in systematic reviews
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of research evidence in the past two decades, the conduct of such reviews is technically challenging, variable in quality, and in need of regular updating to keep the findings current with the
constant publication of new original research reports [17]. Moreover, it is usually original research
reports rather than systematic evidence reviews that capture the attention of the public and public
officials, at least with respect to what is newsworthy from the medias perspective. As reported
to the author by a Dallas (Texas) Morning News Health Reporter several years ago, the root of
the word news is new and there is nothing new in a systematic evidence review (personal
communication)
The World Health Organization (WHO) has identified one issue for global public health as the
know-do gap, and has promoted a global knowledge management strategy targeted to national
policymakers, WHO programmes, and health professionals. The strategy involves five strategic
directions: (1) improving access to the worlds health information, (2) translating knowledge into
policy and action, (3) sharing and reapplying experiential knowledge, (4) leveraging e-Health in
countries, and (5) fostering an enabling environment [18]. While the details of the five strategies
are beyond the scope of this discussion, translating knowledge into policy and action, sharing and
reapplying experiential knowledge, and fostering an enabling environment are all areas closely
related to the three issues previously raised in the introduction to this chapter: (1) translating
research information into actionable knowledge, (2) understanding what practice and policy
communities know from their experience and want to learn from research, and (3) how variation
in research, practice, and policy contexts can be bridged to increase the relevance of research
information to practitioners and policy makers focused on cancer control.
The science of dissemination

To begin with, it should be recognized that within the dissemination and implementation
scientific literature, there persists considerable confusion in terminology. Thus, in a recent study
conducted with 33 applied research funding agencies in nine countries, 29 terms were used to
refer to some aspect of translating knowledge into action [19]. Adding further to the confusion
within the scientific literature is that the same terms can mean different things and different terms
can refer to the same thing both within and across countries [20].
Second, the bulk of research on the dissemination and implementation of evidence-based
interventions has not been specifically focused on cancer control. For example, in 2003,
the National Cancer Institute (NCI), part of the US National Institutes of Health, contracted
through the US Agency for Healthcare Research and Quality (AHRQ) evidence-practice centre
programme at McMaster University in Hamilton, Ontario, to carry out a systematic review of
dissemination and diffusion research that had been published, in relation to the number of systematic evidence reviews published on intervention efficacy in five cancer control domains [21].
The five cancer control domains were: (1) smoking cessation, (2) healthier diet, (3) mammography screening, (4) Pap smear screening, and (5) control of cancer pain.
With the exception of the control of cancer pain, the number of systematic evidence reviews
of cancer control intervention efficacy was always larger than the number of published original
scientific reports of the dissemination and diffusion of such interventions. As such, the authors
were only able to draw limited conclusions from the available dissemination and diffusion
research evidence base, within the context of cancer control that they examined. These conclusions included: (1) very few of the primary studies on dissemination and diffusion of cancer
control interventions used randomized controlled designs to evaluate the dissemination strategy;
(2) passive diffusion approaches, such as mailing of materials to targeted user populations, were
generally ineffective; (3) more active dissemination approaches (e.g. train the trainer models,
and educating opinion leaders) were more effective in promoting change in their knowledge,
attitudes, and behaviours; and (4) the majority of the evidence for strategies to disseminate
evidence-based interventions was directed to clinical providers as the primary audience for cancer
control interventions.
A recent update and expansion of this evidence review, focused on dissemination and implementation research on community cancer prevention [22] concluded that while there has been
a small increase in the number of dissemination and implementation publications focused on
cancer prevention since 2005, there remain a number of challenges in the published literature.
These challenges include: (1) a lack of uniform terminology, (2) studies targeting only a limited
number of intervention delivery settings and target populations, (3) a limited number of valid
and reliable measures of dissemination and implementation processes, (4) triangulation with
and more practice-based evidence, (5) no standardized reporting criteria for dissemination and
implementation research, and (6) the need for more active and multi-modal dissemination and
implementation strategies.
Given the relative dearth of published dissemination and implementation research related
specifically to cancer control, it behoves those concerned about getting the lessons learned from
cancer control science into cancer control practice and policy, to look beyond the field of cancer
control to a number of other research domains. These include the seminal social science work
focused on fields other than health [23], and a growing body of health services research primarily
focused on understanding how new clinical research evidence gets translated into clinical practice
[24], as well as how innovations in health and other service delivery fields diffuse into organizations [25]. The scope of this research literature is very broad. For example, Greenhalgh et al. [25]
identified 13 research traditions relevant to the diffusion of innovations in health service
organizations.
They classified four of these traditions as coming from early diffusion research including rural
sociology, medical sociology, communication studies, and marketing. Noting the important contributions that some of these research traditions had made (e.g. Rogers theories on the diffusion
of innovations [23]), they also summarize several common limitations. These include the primary focus on the individual innovation and the individual adopter as the unit of analysis, and
the implicit assumption that the findings of diffusion research are transferable to different contexts and settings. As will be discussed later, context counts a great deal, not only when considering how to disseminate and implement interventions based on research, but also in the design of
the interventions and in the evaluation of their efficacy and effectiveness [26].
The next set of research traditions included development studies, in which the spread of
innovations was viewed as pertaining to how appropriate a particular technology and/or idea is
for particular situations at particular stages of development. Thus, for example, many high-end
cancer control technologies developed in high income countries may have little or no meaning to,
or applicability in, low income or even middle income countries. Moreover, the contextual fit
between the innovation and the system that is asked to adopt it may be more important than the
fixed properties of the innovation itself. Also included in this group of research traditions were
health promotion and evidence-based medicine, with both research traditions evolving from
one-way knowledge transfer models to more interactive partnerships between research producers
and research users, as well as system and organizational change approaches to the adoption of
innovations [23].
The final set of research traditions summarized by Greenhalgh et al. [25], come from the
organizational and management literature and include: (1) studies of the structural determinants
of innovation in organizations, (2) studies of the process, context, and culture of organizations,
(3) inter-organizational studies, (4) knowledge-based approaches to organizational innovation,
(5) narrative organizational studies, and (6) complexity studies derived from systems theory.
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Given the scope and heterogeneity of the literature stemming from these different research
traditions, there are three approaches to sorting through the breadth and depth of research on
dissemination and implementation science. The one developed by Greenhalgh et al. [25] was
entitled a meta-narrative review where the authors attempted to unfold the storyline of research
from each scientific tradition and then compared and contrasted the storylines. While this did
lead them to develop a conceptual model, they acknowledged that different researchers could
generate a different set of literature and thus generate different storylines leading to a different
conceptual framework.
Another method is to focus on a particular approach to knowledge translation and systematically review the empirical research from that tradition alone. Bero et al. [27] conducted a review
of systematic evidence reviews of interventions to promote the implementation of research findings. Reviewing literature published from 1966 to 1995, they identified 18 systematic evidence
reviews from which they categorized a number of broad strategies to promote the implementation of research findings. These included: (1) dissemination and implementation of clinical
guidelines, (2) continuing medical education, and (3) particular strategies such as audit and feedback and computerized decision support systems. In general, more passive educational approaches
were found to be generally ineffective and more specific strategies with greater intensity appeared
more effective than more general approaches.
Looking at clinical practice guidelines as an example, guidelines have been developed as a
strategy for translating clinical research findings in order to improve the quality of care. Cancer
clinical practice guidelines have been developed and/or disseminated by many professional
organizations (e.g. American Society of Clinical Oncology, European Society of Medical
Oncology), government agencies (e.g. the National Cancer Institute, and the Agency for Healthcare
Research and Quality in the United States), as well as independent organizations such as the
National Quality Forum and the National Cancer Center Network in the United States, and the
National Institute for Health and Clinical Excellence (NICE) in the United Kingdom. Clinical
practice guidelines are being increasingly used to set practice standards [28], however the extent
to which these standards are adopted is related both to the number and diversity of guidelines
published, and the strategies used to disseminate and implement clinical practice guidelines.
With respect to the number and diversity of guidelines published, searching the US National
Guidelines Clearinghouse [29], using the search term cancer, produced a listing of 847 related
guidelines on a diverse set of cancer conditions, from a wide range of international sources.
Narrowing the search to guidelines published between 2006 and 2008, focused on adult cancer
treatment only, reduced the listing down to 204 related guidelines, but often representing more
than one guideline for the same cancer condition from different international oncology organizations. This heterogeneity in cancer guidelines reflects different approaches to the development,
structure, users, and end points of guidelines and suggests that without a systematic evaluation of
their impact on health care practice their utility in broadly influencing cancer care remains largely
unknown [30].
With respect to strategies used to disseminate and implement clinical practice guidelines,
Grimshaw et al. [24] focused on a systematic literature review of research centred on the effectiveness and efficiency of clinical practice guideline dissemination and implementation strategies.
A total of 235 studies, reporting 309 comparisons met the study inclusion criteria. In evaluating
the quality of the studies, the authors judged them overall to be poor. Commonly evaluated single
interventions included practitioner reminders, dissemination of educational materials, and audit
and feedback. Seventy-three per cent of the comparisons involved multi-faceted interventions.
For example, there were 23 comparisons of multi-faceted interventions that involved educational
outreach. The majority of interventions observed modest to moderate improvements in care.
Thus, for example, there was a 14.1 per cent median absolute improvement for reminders, 8.1 per
cent for dissemination of educational materials, 7 per cent improvement observed for audit and
feedback, and 6 per cent for multi-faceted interventions involving educational outreach. No relationship was found between the number of intervention components and the effect of multifaceted interventions.
From a practice perspective, there is limited research evidence available to support health
system decisions about which guideline dissemination and implementation strategies are likely
to be most effective within different service delivery contexts. Also, a relatively small percentage
of studies and intervention comparisons (29.4 per cent) reported any economic data to help
evaluate the cost-effectiveness of different guideline and dissemination/implementation
approaches. From a research perspective, it was suggested that more studies are required to validate existing theories of health professional and organizational behaviour and behaviour change,
to collect and analyze cost data, to develop and validate new and more coherent conceptual
frameworks, and to estimate the effectiveness and efficiency of dissemination and implementation strategies in the varying contexts of barriers, facilitators, and modifiers of the effects of guideline adoption. Chapter 8 describes several examples from Canada and Europe of how guidelines
are being expanded beyond the clinical practice context to influence health systems policies,
and how users of guidelines are partnering with producers of guidelines to make them more
locally relevant.
As Graham et al. noted in their proposed framework for knowledge to action, there is no dearth
of theories, models, and frameworks for taking the lessons learned from science and translating
them into action [19]. In reviewing over 60 theories or frameworks, Graham et al. identified a
number of commonalities among them. They included: (1) identifying a problem that needs
addressing, (2) identifying, reviewing, and selecting the knowledge or research relevant to the
problem, (3) adapting the knowledge or research to the local context, (4) assessing the barriers
to using the knowledge, (5) selecting, tailoring, and implementing interventions to promote the
use of the knowledge, (6) monitoring its use, (7) evaluating the outcomes of knowledge use, and
(8) sustaining ongoing knowledge use. The knowledge to action process framework proposed
by Graham et al. [19] incorporates three stages of knowledge creation (inquiry, synthesis, and
tools production), in addition to the eight elements of the action cycle described earlier. This
knowledge to action framework has been adopted by the Canadian Partnership Against Cancer
(see Figure 5.3) as its framework for knowledge management related to cancer prevention and
control [31].
The wide variety of conceptual frameworks that have been proposed for summarizing the many
and varied processes of translating the lessons learned from science into practice, and vice-versa,
combined with confusing diversity of terminology have contributed to the difficulties for the field
to move forward and gain consensus on basic principles of knowledge translation (KT). Some
frameworks focus on the individual decision maker, others look at the organizational context
in which innovations may take place, while others view the process of integrating science with
service from more of a complex systems perspective.
At the individual decision maker level, decision analysis has been proposed as a means of
closing the gap between research and practice [32]. Thus, knowledge from research is based on
scientific experiments, controlled clinical trials, and epidemiological studies, while knowledge
used in practice is largely based on personal experience and from peers. It is posited that practitioners will respond quickly to new information from research when the research addresses issues
close to the practice interests. However, since research is more often focused on uncovering truth
and researchers tend to put insufficient emphasis on the practical application of their work,
research findings may be a priori rejected by practitioners as irrelevant to their service interests.
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ACTION CYCLE
Intervene
Monitor
KNOWLEDGE CREATION
Assess
barriers
Inquiry
Evaluate
Synthesis
Products
Adapt
Sustain
Identify
problem
Select
knowledge
ACTION PLANING
Fig. 5.3 Canadian partnership against cancer: knowledge to action framework.

Adapted from Lost in Knowledge Translation: Time for a Map? Graham et al. [19], with
permission.
Thus, if new research/practice/policy partnerships can be developed, recognizing the legitimate

differences between the tasks faced by practitioners and policy makers and those faced by
researchers, then a shared decision-making model for integrating science with service may
be possible.
From an organizational and systems perspective, some frameworks conceptualize the process
as relatively linear, starting with research and ending up with adoption and institutionalization
[33,34]. But even in the two linear frameworks referenced here, the end points of the process are
viewed somewhat differently. In the Davis et al. framework [33], after stage 4 where an innovation
becomes integrated into the routine and continuing practices and policies of the social system in
which it was implemented, stage 5 is framed as diffusion of the innovation spreading to other
social systems [23]. In contrast, Khoury et al. [34] discuss implementation, dissemination, and
diffusion research as a third step in a continuum of translation research, with the final step (T4)
focusing on outcomes research evaluating the impact of the adoption of the practice on health
outcomes.
In the absence of a large body of dissemination, implementation, and knowledge translation
research specific to cancer control, it may be important for cancer research funding agencies,
WHAT PRACTITIONERS AND POLICYMAKERS WANT FROM SCIENCE
concerned with getting more of their cancer control science to influence practice and policy,
to increase funding of both observational studies of natural experiments in the diffusion and dissemination of prevention, early detection and treatment innovations, as well as dissemination,
implementation and knowledge translation intervention studies to test specific elements of the
many aforementioned theoretical frameworks that populate the broader health and organizational management literature. However, whether cancer research funding agencies can break with
their addiction to funding discovery research in order to fund more delivery research is an open
question that current funding priorities suggest will be a great challenge.
What practitioners and policymakers want from science

To understand what practitioners and policymakers want from science, it is important to
delineate the diverse audiences that make up these two classes of potential users of information
generated by science. In the public health practice community, there are public health practitioners, whose focus is usually on promoting health and preventing chronic diseases like cancer
within defined populations. Public health practice may be supported by government agencies
and non-government organizations at local, state or provincial, or national levels. Within the
context of government-funded public health services, what public health practitioners want from
science may or may not align with what local, state or provincial, or national policymakers look
for from science.
Within clinical practice, there are primary care practitioners who may also focus on disease
prevention, but usually are concerned with dealing with both infectious illness and/or diagnosing
and treating conditions (e.g. high blood pressure, rectal bleeding) presented by individual patients
that increase the risk of developing or dying from chronic diseases like cancer. Moreover, primary
care clinical practitioners are quite different from specialty care clinical practitioners, in that the
former tend to deal with the whole person while the latter tend to focus on the specific illness or
condition presented by the patient. Thus, in the primary care practice context, integrating the
lessons learned from science with the lessons learned from practice may be more challenging
because of the many and varied health conditions and illnesses confronted in everyday practice
for which new research information is emerging on almost a daily basis.
For cancer care specialists, the scientific literature is more focused on specific cancers and/or
modalities of diagnosis and treatments. On the one hand this can make the dissemination of
scientific discoveries into practice simpler, because there is greater homogeneity of the clinical
issues being addressed. On the other hand, given that much of the research on medical, radiological, and even surgical approaches to cancer care is conducted in relatively resource-rich academic
environments, the dissemination potential of new cancer care technologies may be limited by the
variation in resources within the diverse clinical care environments in which cancer patients are
diagnosed and treated.
A key point made by Lomas [35] in his discussion of consensus recommendations as evidence
for clinical practice, is that the messenger of the evidence may be as important as the message
about the evidence. Thus, Lomas notes that in constituting panels to review evidence, medical
specialty societies tend to constitute panels made up of clinical experts; research councils,
universities, and research funding agencies favour scientific experts; and public foundations and
government-sponsored panels are more likely to include non-experts in the content being
reviewed. Thus, if the audiences to be reached with scientific evidence reviews include community practitioners and decision-makers, then ensuring visible representation of their viewpoints
in consensus panels may be critical to the acceptability of the messages being disseminated.
This specific observation for consensus panels has broader implications for ensuring that the
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messenger of the evidence is credible to the audiences to whom the evidence-based message
is directed.
Moreover, engaging the practice and policy audiences of scientific evidence as to the best
approaches to getting the research information to them in a form that is most likely to be assimilated increases the probability that new research evidence will be acted upon. Both detailing,
as practiced by pharmaceutical representatives, and automated feedback to practitioners are
methods that demonstrate that when feedback can be tailored to the individual practitioner and
his/her practice context, the uptake and use of this new evidence is increased [36]. The challenge
of tailoring messages to individual practice and policy decision-makers, and the contexts in
which they work, is complex and resource intensive given the diversity which exists in the public
health, clinical practice, and health policy contexts for health in general and cancer control
in particular.
Turning to the public policy context, one of the most extensive studies of how academic
research is used by which decision-makers in national and provincial government agencies was
conducted by Rejean Landry and associates at the University of Laval in Quebec, Canada [37].
Landry et al. used survey study findings to answer three questions: (1) To what extent is academic
research used in government agencies? (2) Are there differences across policy domains in regard
to the extent of its use? (3) What determines use of academic research in government agencies?
In the sample of 833 mail survey respondents (35 per cent response rate), 25 per cent of the
sample represented agencies in the Canadian federal government while the remaining 75 per cent
represented provincial government agencies with good geographic spread across Canada. With
respect to types of agencies represented, 27 per cent of the respondents were in economic development, public finance, and taxation agencies; 18 per cent were in social services, health, and
social security, 13 per cent worked in municipal and regional affairs, 11 per cent in environment,
forestry, fishing and agriculture, 11 per cent in job creation and employment conditions, 9 per
cent in education, communication, and technology, 9 per cent in language, culture, immigration,
justice, and native affairs, and two per cent in other domains.
Looking across the six stages of knowledge utilization (1-reception, 2-cognition, 3-discussion,
4-reference, 5-adoption, 6-influence) [38], and across all types of agencies represented in the
sample, approximately 12 per cent of respondents reported usually or always receiving academic
research pertinent to their work and 9 per cent reported that the research received usually or
always influenced decisions in their administrative units. Looking within the policy domains
described earlier, the use of academic research reached its highest self-report levels in the
domains of education and information technology, followed closely by social services, health,
and social security.
In the social services, health, and social security domain the factors that increased the likelihood
that academic research information would be utilized included: (1) acquisition efforts (e.g.
personally making an effort to establish relationships with university researchers); (2) linkage
mechanisms (e.g. meetings with colleagues in the respondents field, congresses, conferences,
scientific seminars involving university researchers); (3) users context (e.g. university research
results are considered pertinent by colleagues, university research work, studies, and reports
reached the respondent at just the right time to be used). Across all policy domains, users
context was the best predictor of utilization of academic research information. Users acquisition
efforts, linkage mechanisms, and adaptation of research products for users were also good
predictors across all domains. However, of potential interest and relevance to cancer control
and health policy domains, adaptation of research products to users was not a significant
predictor of self-reported research information utilization in the social services, health, and social
security domain.
Looking across all policy domains, Landry et al. come to several broad conclusions and make
several broad recommendations to increase the utilization of academic research in public policy
domains. First, the types of research (e.g. quantitative vs. qualitative) conducted to produce the
research finding were not that important in predicting what research was utilized. Similarly,
research focused on the advancement of scholarly knowledge was not a good predictor of the
uptake of academic research. Thus, neither was considered a good lever for increasing the uptake
of academic research in policy contexts. Second, the finding that user context positively influenced research information use means that the uses of research findings are contingent on
the specific situation of the user. This creates a challenge for researchers and users alike to bridge
the gap between a research discovery context and a policy decision-making application context.
Finally, the importance of encouraging users to find and use research, expanding linkages between
researchers and research users, and academics efforts to tailor research products to users needs
and their context for action all lend themselves to interventions to increase the links between the
lessons learned from science with the lessons learned from practice and policy.
Bridging communities of research, practice, and policy:

context counts
As noted previously, one of the research frameworks to understand the role of context is from the
organizational change literature as applied to the adoption of innovations [25]. For example,
a study of the variation in adoption of respiratory diagnostic and treatment innovations in US
hospitals, published over 30 years ago, continues to provide some important clues into the role of
context in explaining the extent of hospital adoption of clinical innovations [39]. Looking at
the adoption of 11 innovations for monitoring and treatment of patients with respiratory diseases
in a sample of 295 hospitals surveyed, three sets of mechanisms that hospitals could use to
expand the integration of new research-tested innovation information were examined: (1) extraorganizational mechanisms (e.g. hospital support for physician travel to external scientific
meetings), (2) internal mechanisms (e.g. hospital support for outside speakers to present), and
(3) joint mechanisms (e.g. hospital physician participation in research and publication).
A key contextual difference between the US hospitals in the study was whether or not they
had a respiratory disease specialty care unit (i.e. department of inhalation therapy). Those hospitals with a specialty care unit on average adopted 5.84 of the 11 innovations assessed, while those
hospitals without such a unit adopted a significantly smaller number of innovations (3.04). While
this difference is not surprising, the factors that were correlated with the number of innovations
adopted differed somewhat between the two groups of hospitals. While the number of paid
outside speakers was positively correlated with adoption of innovation in both sets of hospitals,
in hospitals with specialty care units the only other correlate of innovation uptake was hospital
reimbursement for physicians participating in outside meetings. This factor was not a significant
correlate of uptake in hospitals without a specialty care unit, but physician participation in
laboratory research and physician publication were both significant correlates of the uptake
of innovations in hospitals without a specialty care unit. The authors speculate that in hospitals
with specialty care units the staff attending professional meetings act as conduits for and repositories of new technologies. In hospitals without specialty care units, physicians participating
in research and publication may be more important because research is relatively less prevalent
in these settings.
If these findings can be generalized beyond respiratory care, the implications for the adoption
of innovations in cancer care are worth considering. For example, in the United States between
10 to 15 per cent of patients are estimated to receive their care in academic medical centres with
specialty cancer care units [40]. An unknown percentage receives care in relatively high resource
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community hospital settings, again with specialty care units, and the remaining percentage
receives care in resource-limited health care settings without specialty cancer care units. Thus,
to increase the spread of cancer care innovations across these three different cancer care contexts,
different approaches may be needed. Short of requiring that all cancer patients be seen in
hospitals with specialty cancer care facilities, expanding research/practice partnerships in
resource-limited health care settings may be a critical conduit for increasing the adoption of
evidence-based practices in these contexts and thus reducing the disparities in outcomes experienced by the medically underserved.
To foster more research/practice partnerships, as well as research/policy partnerships, it is
important to recognize the philosophical conflicts that exist between scientists versus practitioners and policy makers. The practitioner and policy maker are often under time pressure to act
immediately, to solve complex problems with limited information, and to make judgments on
whatever knowledge is available at the time. Conversely, scientists are trained to reserve judgment
until all the data are in and analyzed, to test and refine hypotheses, to isolate variables and hold
contextual conditions constant, and to continuously reinterpret observations and revise theories
as new data become available [41]. There are often differences between the questions that interest
practitioners and policy makers and the questions that interest researchers, and a variety of skills
are required to communicate in common sense terms the findings from research and apply
research to practical problems. To close the philosophical gap between research, practice, and
policy, investments of time and energy need to be made by scientists, practitioners, and policy
makers to help create a new culture of trans-disciplinary collaboration.
Thus, research is more likely to have an impact on policy and practice when those involved in
policy or practice have been involved in planning the research; and in these circumstances the
results of the research are more likely to be reported directly to the relevant decision-makers.
To foster a culture of trans-disciplinary collaboration new models of funding research/practice/
policy partnership relationships rather than just specific research projects need to be developed.
These can provide the longer term commitment to shared research priority setting which can
enhance the chances that the findings will be influential. Finally, there is an advantage to developing context-specific local research initiatives in that these allow a much clearer linkage between
research, practice, and policy [42].
To the extent that evidence-based medicine is focused on accelerating knowledge transfer
from science into practice, it is also important to recognize that practitioners are not blank disks
waiting for the latest research findings to be downloaded into their RAMs. Rather practitioners
are subject to powerful contextual influences in their local practice environments. In broad
terms Lomas [43] articulated these influences to include educational, administrative, personal,
patient-based, community-based, and economic. Thus, even when research information has
been synthesized and disseminated (e.g. as practice guidelines) by a credible body, its impact is
likely to be limited to awareness, attitude, and perhaps new knowledge. However, for practice to
change, implementation efforts must be made that are coordinated with the various contextual
factors within which practitioners operate.
A very well delineated conceptual framework (see Figure 5.4) to coordinate the introduction of
evidence-based approaches into cancer control practice contexts has been developed by the
Cancer Prevention and Control Research Network jointly funded by the US Department of
Health and Human Services (DHHS) Centers for Disease Control and Prevention (primarily
focused on supporting evidence-based practice) and the DHHS National Institutes of Health
National Cancer Institute (primarily focused on supporting cancer control research) [44]. The
Cancer Prevention and Control Research Network (CPCRN) provides an infrastructure for
applying relevant research to local cancer prevention and control needs. Its members conduct
1
Consider using EBAs
2
Choose or confirm cancer type & population
NO
YES
Cancer type & population chosen?
2A
2C
Choose cancer type & population
Construct rationale
2B
Confirm cancer type & population
DH1
Develop & assess feasibility
of intervention goal
Conducting a
needs assessment
Examine evidence-based approaches
4
4B
4A
Consider CG/other intervention approaches that would promote
goal attainment (e.g. client reminders, small media)
Assemble candidate programmes
Consider appropriateness of these intervention

approaches to the community
Evaluate potential fit

of candidate programmes
5
Make decision about programme/intervention approach
Narrow the options; assess fit of programmes/intervention approaches under review; choose programme/approach
Have you chosen a programme

or intervention approach?
YES
No recommended
intervention
approach available
(insufficient evidence)
+
Programme available
(RTIPs/Other)
Guide/other
recommended
intervention
approach available
+
Programme available
(RTIPs/other)
Recommended
intervention
approach available
+
No programme
available
NO
No recommended
intervention
approach available
(insufficient evidence)
+
No programme available
Recommended
intervention
approach available
+
No programmes
that fit available
6
Adapt existing programme(s)
What do you want to change?

9
6B
6A
Minimally adapt (replication)
Make major changes
Develop a new programme
DH2
Overcoming barriers to
programme replication
7B
7A
Plan implementation
Plan implementation
9A
Implementation planning
DH3
Creating community/
agency ownership
8A
Evaluate:
process only
9B
8B
Evaluate:
process, outcome
Evaluate:
process (in depth),
outcome
Fig. 5.4 Conceptual framework for adapting evidence-based approaches (EBA) to real-world contexts.
From Fernandez ME et al. and the Cancer Prevention and Control Research Network,
Evidence-based Approaches, workgroup [45], with permission.
95
96
community-based participatory cancer research across its eight network centres, crossing
academic affiliations and geographic boundaries.
The conceptual framework is the basis of a new training programme for integrating evidence
into practice entitled TACTIC (Tailored Assistance for Choosing Tested cancer control tools
In Communities). As outlined in Figure 5.3 there are nine modules in the training programme:
(1) deciding to use evidence-based approaches; (2) focusing on a cancer and a population
(2a, 2b, 2c); (3) creating programme goals and objectives; (4) finding evidence-based programmes
and approaches (4a & 4b); (5) choosing a programme or intervention approach; (6) programme
adaptation; (7) implementation planning; (8) evaluation; and (9) programme development.
As such, TACTIC can be seen as a set of decision support tools for community-based cancer
control planners, decision-makers, and practitioners [45].
Whatever decision support tools may be made available for cancer control, there are many
types of intervention programmes and intervention approaches from which to choose, with
different levels of evidence applied to each. Exemplar questions that programme staff and policy
makers often face when deciding how best to address a cancer control problem are: (1) Which
programme or intervention approach has the strongest evidence of efficacy and effectiveness?
(2) Which programme or approach has the best fit for the service delivery context in which we are
operating? (3) Which programme or approach can most easily be adapted to improve the fit in
our service delivery context or to meet the needs of our target populations? (4) How much flexibility do we have to adapt the programme or the approach without seriously undermining the
impact on outcomes? (5) Which programme or intervention approach can we afford to implement within the resource base of our service delivery context? Researchers may be inclined
to focus more on the first question while practitioners may be sensitive to the more practical
questions 2 to 5 [2].
Recognizing that the answers to some of these questions may be in conflict with the answers to
others, it should be recognized that for every context there is balance that must be reached
between, for example, implementing an intervention with fidelity to ensure positive outcomes,
and adaptation to help increase the contextual fit and implementation feasibility in real world
settings. There is debate around the issue of implementation fidelity versus programme adaptation. Some argue that implementing the interventions with fidelity is the best way, perhaps the
only way, to ensure comparable outcomes [46]. Adapting the intervention to help with contextual
fit could be considered later, as long as core intervention elements were preserved intact. Others
point out that unless programme implementers were able to adapt the intervention a priori to
address contextual and population fit, and perhaps imbue a sense of programme ownership of
the evidence-based intervention being implemented, there would be a much lower likelihood of
initiating implementation in the first place.
Conceptual frameworks (like TACTIC) for engaging researchers, practitioners and policymakers in working through a set of shared decisions about what research evidence is most relevant to the issues at hand that need to be addressed, may provide the greatest hope from moving
away from passive diffusion and dissemination approaches, into knowledge exchange models
that encourage an active dialogue and partnership between the producers of research evidence
and the users of research evidence. However for such partnerships to be formed and sustained, all
parties in the research, practice, policy cycle of knowledge to action and action back to knowledge
must be provided the time to engage in these knowledge exchange partnerships and must
be rewarded for their efforts in this regard. There are few if any incentives built into the academic,
practice, or policymaking contexts that currently exist to support such a culture change. Absent
such changes in priority setting and professional time management, the prospects for building
and sustaining research/practice/policy partnerships are limited.
REFERENCES
Conclusions
Cancer control practice and policies within and across countries can more quickly benefit from
the substantial investment made in fundamental, intervention, and health services research if
research and practice funding agencies, professional organizations, and policymakers commit
to working together to close the gap between what we know and what we do. The balance between
the enormous investments made in fundamental discovery research compared with the much
more modest investments made in the more applied sciences, including dissemination and
implementation research, must be re-evaluated if the lessons learned from science are to be better
integrated with the lessons learned from practice and policy.
Expanded investments in dissemination and implementation research must be made if the
process of integrating science with service is to be based on more than just who we know but also
on what we know or need to know about these complex processes. In addition, intervention
development and health services research on emerging cancer prevention and control technologies, based on discoveries from fundamental research, should reach out to the public health and
clinical practice communities to engage them as partners in this applied research, rather than
treating them as simply passive audiences waiting for the next novel technology to be handed to
them. These participatory practice-based research approaches are particularly important in low
and moderate income countries or regions, so that the dissemination and implementation potential of novel approaches to the prevention, diagnosis, and treatment of cancer can be considered
early on in the intervention development and testing process. Without such participatory partnership approaches, the introduction of new technologies with limited dissemination potential
will almost always exacerbate health disparities.
Finally, new models for research/practice/policy partnerships need to be developed, tested, and
supported for those approaches that are shown to increase knowledge exchange and the adoption
of evidence-based cancer prevention and control strategies. As communities of practice (COPs)
are formed for international cancer control, supporting trans-disciplinary membership in these
COPs, and supporting knowledge exchange forums among researchers, practitioners, and policymakers, can provide important exemplars for efforts within countries to increase the integration
of science and service, and to accelerate the translation of knowledge into action.
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99
Chapter 6
The impact of immunization on cancer

control: the example of HPV vaccination
Ann Burchell, Eduardo Franco1
Many types of cancer are aetiologically linked to infections with specific microbial agents. Taken
together, such infections are responsible for about 18 per cent of all cancers worldwide and up
to 25 per cent of cancers in developing nations [1]. Such a high attributable fraction is second
only to that of tobacco smoking in cancer control. The realization that some cancers are caused
by infectious agents means that vaccination can be considered as a primary prevention measure.
Vaccination has substantial public health potential. No other preventive measure has such
dramatic appeal, in terms of a successful track record in public health. Only vaccination has the
ability to eliminate disease. Vaccination for cancer prevention has moved beyond theory and
become a reality for two neoplastic diseases: liver cancer and cervical cancer. This chapter reviews
briefly the role of infections as causal agents in cancer, describes anti-hepatitis B virus (HBV)
immunization as the first cancer vaccine paradigm, and finally focuses on the latest paradigm of
prophylactic vaccination against human papillomavirus (HPV) infection as the new front in
cancer prevention.
Microbial aetiology of cancer and the example of

HBV vaccination
Although many viruses, bacteria, and protozoan and metazoan parasites have been mentioned in
the biomedical literature as potentially carcinogenic, conclusive epidemiologic and molecular evidence to date has been unequivocally demonstrated for only a few agents, relating to many forms
of cancer. Simply finding pathologic or molecular evidence that an agent is present in the human
host or that the latter was previously exposed to this agent is not sufficient to establish causation.
The World Health Organizations International Agency for Research on Cancer (IARC) has developed valuable guidelines that can be used in deciding for policy purposes whether a biological,
chemical, or physical agent (or an industrial process) can be deemed as causally related to cancer
in humans. These guidelines are applied during expert review of the published evidence concerning a putative association. The conclusions of this process are published as part of IARCs monograph series on evaluation of carcinogenicity and can be accessed online in that agencys website
(http://monographs.iarc.fr/ENG/Monographs/PDFs/index.php, accessed September 5, 2008).
Since its inception, the IARC monograph programme has evaluated several microbial agents.
The list is summarized in Table 6.1. As shown, several infectious agents have been established as
carcinogenic or probably carcinogenic to humans. For others, the evidence is less conclusive but
1
Ann N. Burchell, PhD, Division of Cancer Epidemiology, McGill University; and Eduardo L. Franco, MD,
DrPH, Professor of Epidemiology and Oncology, Director, Division of Cancer Epidemiology, McGill
University, Montreal, Quebec, Canada.
102
THE IMPACT OF IMMUNIZATION ON CANCER CONTROL: THE EXAMPLE OF HPV VACCINATION
Table 6.1 Microbial agents evaluated by the International Agency for Research on Cancers
monograph series with respect to the accumulated scientific evidence that they may cause cancer
in humans
Monograph volume
and year
Infectious agent
Evaluation
Group
59, 1994 [2]
Hepatitis B virus (HBV) (chronic infection)
Carcinogenic
Hepatitis C virus (HCV) (chronic infection)
Carcinogenic
Hepatitis D virus (HDV)
Not classifiable
Schistosoma haematobium
Carcinogenic
Opistorchis viverrini
Carcinogenic
Clonorchis sinensis
Probably carcinogenic
2A
Schistosoma japonicum
Possibly carcinogenic
2B
S. mansoni
Not classifiable
O. felineus
Not classifiable
Helicobacter pylori
Carcinogenic
Human papillomavirus (HPV) types 16 and 18
Carcinogenic
HPVs types 31 and 33
2A
HPVs, other types (except 6/11)
2B
Human immunodeficiency virus (HIV) type 1
Carcinogenic
Human T lymphotropic virus (HTLV) type I
Carcinogenic
HTLV-II
Not classifiable
HIV-2
2B
Epstein-Barr virus (EBV)
Carcinogenic
Human herpesvirus (HHV) type 8
2A
HPVs 16, 18, 31, 33, 35, 39, 45, 51, 52, 56,
58, 59, 66
Carcinogenic
HPVs 6, 11
2B
HPV genus Beta
2B
61, 1994 [106]
64, 1995 [8]
67, 1996 [107]
70, 1997 [108]
90, 2007 [16]
Groups 1, 2A, 2B, and 3 are the overall assessment, summarized as shown.
points to a possible carcinogenic role, whereas for some other agents the evidence is inconclusive.
Among those for which the evidence is compelling are hepatitis B and C viruses (HBV and HCV;
liver cancer), certain genotypes of human papillomavirus (HPV; cervical, anogenital, and oral
cancers), Epstein-Barr virus (EBV; certain types of lymphomas and nasopharyngeal carcinoma),
human T cell lymphotropic virus I (some forms of leukaemias), human immunodeficiency virus
(HIV; AIDS-associated malignancies), human herpes virus 8 (HHV-8; Kaposis sarcoma),
Helicobacter pylori (stomach cancer and mucosa-associated lymphoid tissue lymphomas),
Schistosoma haematobium (bladder cancer), and some forms of liver flukes (e.g. genus Opistorchis;
liver cholangiocarcinoma). Altogether, it has been estimated that these agents cause 17.8 per cent
MICROBIAL AETIOLOGY OF CANCER AND THE EXAMPLE OF HBV VACCINATION
of incident cancers worldwide (12.1 per cent, 5.6 per cent, and 0.1 per cent for viral, bacterial and
parasitic infections, respectively) including as much as 5.2 per cent for HPV alone [1].
As shown in Table 6.1, the accumulated evidence for a causal role for chronic HBV infection in
hepatocellular carcinoma was the first target among biological exposures assessed by the IARC
monograph programme [2]. It is estimated that 54.4 per cent of global liver cancers are attributable to HBV, for a total of 340,000 cases in 2002 [1]. An HBV vaccine became commercially available in 1981 and was found to be highly efficacious in preventing chronic HBV carriage [3].
Further refinements to the vaccine preparation were made over the years, which also contributed
to a reduction in production costs, thus making HBV vaccination affordable enough for inclusion
in public health programmes. Long-term follow-up data from several countries has shown that
symptomatic HBV infection is rare following vaccination, and that immunity persists for at least
a decade [4].
British Columbia, Canada, was one of the first regions in North America to introduce universal
HBV vaccination. In 1992, a school-based programme was initiated, offering HBV vaccine to all
Grade 6 students (children aged 11 years). Following this introduction of adolescent vaccination,
the annual incidence rate of acute hepatitis among those aged 12 to 20 years declined from 1.7 per
100,000 in 1992 to zero per 100,000 in 2001, suggesting elimination of HBV transmission within
the targeted age group [5]. Similar impacts on rates of acute hepatitis B have been observed in
other jurisdictions [4]. Furthermore, there is now evidence that HBV vaccination has the desired
effect of preventing liver cancer. For example, a mass newborn vaccination programme was
implemented in Taiwan in 1984, with later catch-up programmes for older children and adults
[6]. Annual incidence rates of childhood (aged 614 years) hepatocellular carcinoma subsequently declined from 0.70 per 100,000 in 1981 to 1986 to 0.57 in 1986 to 1990, and further to
0.36 in 1990 to 1994. Mortality rates from childhood hepatocellular carcinoma also declined
in the same period. The full impact of the Taiwanese programme will be verifiable once these
vaccinated cohorts reach the peak age of onset of liver cancer.
The lessons learned from the implementation of HBV vaccination are extremely valuable as the
first example of a successful prophylactic cancer vaccine. The rationale for adopting an HBV
vaccine in clinical practice is simple; hepatitis B is an important disease in itself and is responsible
for considerable morbidity and economic costs, even without factoring in the benefits in reduced
risk of liver cancer later in life. However, affordability was an important issue; at $100 per course
of immunization initially the vaccine was out of reach for most developing countries. Even in
Western countries, cost considerations led to policies recommending immunization only of highrisk individuals and health workers, which unfortunately restricted the impact of vaccination to
preventing only 5 per cent of the cases of liver cancer [7]. Subsequently, strong leadership by various agencies and the WHO permitted rapid technology transfer to multiple manufacturers,
including those in developing countries. The end result was a remarkable reduction in vaccine
production costs to about $1 per paediatric dose, which led to demonstration projects of mass
immunization in several high-risk countries [7].
The experience with HBV vaccination has become particularly important also because we have
now the opportunity to include a second cancer in the list of neoplastic diseases that can be prevented by immunization. Recently, two prophylactic vaccines against HPV infection have become
available. HPV infection is recognized today as the necessary causal factor of all cervical cancer
(squamous cell and adenocarcinomas) cases in the world, and the cause of a substantial proportion of many other anogenital neoplasms [8,9]. HPV has also been implicated in the genesis of
head and neck cancer. The evidence for the oncogenic potential of HPV did not come easily, but
resulted from a culmination of more than 25 years of vigorous multi-disciplinary research by
molecular biologists, virologists, immunologists, clinicians, and epidemiologists. This realization
103
104
paved the way for new exciting approaches for preventing cervical cancer, which is the second
most common malignancy of women worldwide [10]. In the remaining of this chapter we summarize the scientific progress that led to the recognition of HPV as a cause of cervical and other
cancers, the subsequent development of HPV vaccines, and how the implementation of these
vaccines will result in a paradigm shift in the prevention and screening of HPV-related cancers.
The epidemiology of cervical cancer and HPV infection

Epidemiology of cervical cancer
Worldwide, cervical cancer is the second most common malignant neoplasm of women, accounting for nearly 10 per cent of all cancers (non-melanoma skin cancers excluded). It is estimated
that 493,000 new cases of invasive cervical cancer were diagnosed in 2002, 83 per cent of which
were in developing countries [10]. Cervical cancer can be characterized as a disease of poorer
nations, with a disproportionate number of cases and the greatest proportion of deaths occurring
in such regions. The highest risk areas for cervical cancer are in sub-Saharan Africa, Melanesia,
the Caribbean, and Latin America, with average annual incidence rates above 30 per 100,000
women (rates standardized according to the world population of 1960) (Figure 6.1). Not surprisingly, in view of the substandard healthcare conditions, these areas also bear a disproportionately
high mortality burden due to cervical cancer. Every year, an estimated 273,000 deaths from cervical cancer occur worldwide, with over three-fourths of them in developing countries [10].
One of the main reasons for the global heterogeneity in cervical cancer incidence and mortality
is the implementation of Pap cytology screening in high-income countries over the past 50 years.
In developed countries where universal organized or opportunistic screening was adopted,
there was a 50 to 80 per cent reduction in cervical cancer rates [11]. Cervical cancer rates are now
substantially lower in Western Europe and North America at less than 10 new cases annually per
100,000 women [12].
In developed countries, 66 per cent of women diagnosed with cervical cancer survive
longer than five years whereas the 5-year survival rate in developing countries is less than
50 per cent [13]. The impact of this relatively low survival experience is increased by the fact that
in high-fertility developing countries, cervical cancer generally affects women in the early postmenopausal years who often are the primary or sole caregiver for many school-age and teenage
sons and daughters. The pre-mature loss of these mothers has a tremendous negative impact on
the social structure of the local communities.
Epidemiology of HPV infection

The more than 100 HPV genotypes (types, for short) that have been catalogued so far are classified according to their DNA homology, which closely reflects tissue tropism (mucosal or cutaneous) and oncogenic potential [14]. About 40 types infect the epithelial lining of the anogenital
tract and surfaces, as well as of other mucosal areas of the body, such as the upper aero-digestive
tract. Among these mucosal HPVs, some 13 to 18 types have been identified as of probable or
definite high-oncogenic risk (HR-HPV) on the basis of the frequency of association with cervical
and other anogenital cancers and their pre-cancerous lesions. Over the years, the list of HR-HPVs
has increased as a reflection of the continuous improvement in assay performance and the accumulated clinical literature on the distribution of HPV types in lesions from many parts of the
world [15]. A recent conservative assessment by the IARCs Carcinogenicity Monograph Series
referred to types 16, 18, 31, 33, 35, 39, 45, 51, 52, 55, 56, 58, 66 as HR-HPVs [16].
Infections with most mucosal HPV types that are not deemed as HR-HPVs are of no
clinical consequence and cause no symptoms or visible lesions; such types are considered of
THE EPIDEMIOLOGY OF CERVICAL CANCER AND HPV INFECTION
Eastern Africa
Southern Africa
Melanesia
Caribbean
Central America
Western Africa
South America
Polynesia
Middle Africa
South Central Asia
South-Eastern Asia
Eastern Europe
Northern Africa
Southern Europe
Western Europe
Micronesia
Northern Europe
Northern America
Eastern Asia
Incidence
Australia/New Zealand
Mortality
Western Asia
0
10
20
30
40
50
Age-standardized annual rate (per 100,000 women)

Fig. 6.1 Average annual incidence and mortality rates for cervical cancer by region, 2002.
Standardization according to the age structure of world population of 1960.
Source: Globocan 2002 (Ferlay et al. [10]).
low-oncogenic risk (LR-HPV). Two LR-HPVs, however, HPVs 6 and 11, can cause benign lesions
of the anogenital areas known as condylomata acuminata (genital warts), as well as a large
proportion of low-grade squamous intraepithelial lesions (LSIL) of the cervix. Such LR-HPV
infections are responsible for substantial morbidity and incur high costs associated with the treatment of the clinically relevant lesions. Perinatal transmission of HPV is also possible and can
cause in rare instances recurrent respiratory papillomatosis in infants and young children [15].
Genital HPV infection is the most common sexually transmitted infection (STI) among women
[17]. The prevalence of HPV infection varies greatly by age and by geography [18,19]. Among
asymptomatic women in the general population or attending routine cervical cancer screening,
prevalence rates are in the 2 per cent to 44 per cent range [15]. In a meta-analysis using data from
78 published studies, among women with normal cytology the age-adjusted global prevalence
of any HPV type infection was 10.4 per cent, with considerable variation by age and region [19].
Prevalence was highest for young women and decreased in the middle age groups, followed by
105
106
a second peak in prevalence in the older age groups. The two most common HPV types were
HPV-16 (prevalence 2.5 percent) and HPV-18 (0.9 per cent).
HPV DNA has also been clearly identified in the male genitalia, anal mucosa, and oral cavity,
but compared to women, fewer prevalence data exist. Depending on the population studied,
sampling method and anatomic site, male genital HPV prevalence ranges from 0 to 73 per cent
[20,21]. HR-HPV appears to occur in a higher proportion of male than in female infections [20].
Penile HPV prevalence increases with the number of sex partners and with the number of sex
worker partners [21]. Men who have sex with men have been observed to have a particularly high
prevalence of HPV [22].
Follow-up studies have documented high rates of HPV acquisition among young women;
several studies have reported cumulative incidences of 40 per cent or greater after three years
of follow-up [15]. High incidence among men has also been observed [21], although far fewer
longitudinal studies have been conducted among males. Data supporting sexual intercourse as
the primary route of genital HPV transmission include high incidence following sexual debut,
documented transmission of genital warts between sex partners, concordance in sex partners for
type-specific and HPV-16 variant-specific HPV DNA, the rarity of genital HPV infection in
women who have not had vaginal intercourse, the strong and consistent associations between
lifetime numbers of sex partners and HPV prevalence, and increased risk of HPV acquisition with
new sex partners [23]. Many earlier studies did not observe a protective effect of condoms [24],
but, in more recent studies specifically designed to address this question, consistent condom use
does appear to reduce the risk of HPV infection [25,26].
Natural history of HPV infection and progression to

cervical cancer
Following HPV acquisition, the natural history consists of either HPV clearance or development
of a persistent HR-HPV infection and cervical neoplastic development. HPV infection triggers
a slow process of disruption of the normal maturation of the transformation zone epithelium of
the uterine cervix near its squamo-columnar junction [27]. This process of abnormal changes is
initially limited to the cervical epithelium. These pre-invasive lesions, known in the old classifications as dysplasia or, more recently, as squamous intraepithelial lesions (SIL), can be discovered
through cytological examination using the Papanicolaou technique (Pap screening test) and
confirmed by colposcopic examination and biopsy as cervical intraepithelial neoplasia (CIN).
They are invariably asymptomatic and if left untreated, they may eventually extend to the full
thickness of the cervical epithelium (cervical carcinoma in situ (CIS)), and traverse the lining
formed by the basement membrane to become invasive. This process may take a decade or longer
but will eventually occur in a substantial proportion of CIS patients.
Although HPV infection is the central cause of cervical cancer, only a small percentage
of women who are infected go on to develop cervical cancer or its precursors. Most HPV
infections detected via molecular hybridization techniques are transient, and are no longer
detectable within one to two years [15]. Even among women with persistent infection, HPV
alone is not a sufficient cause and much work has been devoted to determining why certain
HPV-positive women develop cervical cancer while others do not. The multi-factorial model of
cervical cancer aetiology suggests an interplay of various cofactors. Smoking, high parity, long
term use of oral contraceptives, co-infections and immunosuppression have been found to
increase the risk of cervical cancer. Other factors such as genetic polymorphisms in the Human
Leukocyte Antigen (HLA) system, polymorphisms in some oncogenes, nutrition, insulin-like
growth factors (IGFs), and viral factors have also been identified as contributing to the overall
cervical cancer risk [28].
THE EPIDEMIOLOGY OF CERVICAL CANCER AND HPV INFECTION
Identification of the causal role of HPV in cervical carcinogenesis

Early on, cervical cancer was hypothesized to be related to sexual activity even before the advent
of analytical epidemiologic studies. The simple premise was the widely held view that nuns did
not develop this neoplasm whereas sex trade workers had an increased risk. Epidemiologic studies
clearly identified specific sexual behaviours as key risk factors, such as age at first sexual intercourse and number of sexual partners [23]. During much of the 1960s and 70s, the consistency of
epidemiologic findings pointing to a sexually-transmitted infection model propelled research
efforts to identify the putative causal microbial agent or agents. Many sexually-transmitted agents
were considered, and the herpes simplex virus (HSV-2), syphilis, gonorrhoea, and Chlamydia
trachomatis were suspected. The evidence available at the time indicated that genital infection
with HSV-2 was the most likely culprit. Although HSV was proven carcinogenic in vitro and in
vivo, the evidentiary link to cervical cancer was mostly indirect [29].
In the 1980s the attention gradually turned to a new candidate, HPV, with the emergence of a
consistent evidence base from molecular biology. Harald zur Hausen was the primary leader
behind the long-standing hypothesis that proliferation of HPV in the cervical epithelium leads to
disruption of cell maturation that develops as CIN, the pre-cancerous lesion; he was awarded the
Nobel Prize in 2008 for this work. His initial insightful observations and experiments were made
as early as in the late 1970s (reviewed in [30]). He and others subsequently conducted groundbreaking research that led to an understanding of how the early viral oncogenes E6 and E7 interfere
with key regulators of the cell cycle, thus immortalizing cervical cells and preventing them from
undergoing senescence and being lost by the normal exfoliation that regenerates the epithelium.
The demonstration of this series of molecular events was essential for the scientific community to
accept that HPV infection was the likely cause of cervical cancer, as shown in Figure 6.2.
Fig. 6.2 Causation of cervical cancer by human papilloma virus.

Source: From The Nobel Foundation, 2008 in relation to the award of the Nobel Prize to H. zur
Hausen (http://nobelprize.org/nobel_prizes/medicine/laureates/2008/press.html), with permission of
the Nobel Foundation.
107
108
Reeves, 1989; NAH

Donnan, 1989; NAH
Peng, 1991; PCR
Muoz, 1992; PCR
Shen, 1993; PCR
Eluf-Neto, 1994; PCR
Asato, 1994; PCR
0.1
10
100
1000
RR and 95% CI
Fig. 6.3 Relative risks for associations between HPV and cervical cancer in case-control studies of
first generation.
Abbreviations: NAH: non-amplified DNA hybridization; PCR: polymerase chain reaction; RR: relative
risk; CI: confidence interval. Adoption of improved HPV DNA detection techniques such as PCR and
better experience with laboratory procedures aiming at controlling contamination and other sources
of measurement error led to a gradual increase in the RR estimates in successive studies.
Sources: Reeves et al. 1989 [109]; Donnan et al. 1989 [110]; Peng et al. [111]; Muoz et al. 1992
[32]; Shen et al.1993 [112]; Eluf-Neto et al. 1994 [113]; & Asato et al. 1994 [114].
This acceptance did not come easily. There was much scepticism concerning the role of HPV
infection. Reasons included observations that HPV infection was quite ubiquitous and, as such,
it could not plausibly be a cause of disease. Contributing to the controversy were the weak to
moderate associations that were observed in early molecular epidemiologic studies, unlike those
one would expect from a key intermediate endpoint in cervical carcinogenesis (Figure 6.3). Later
it was learned that measurement error in detecting cervical HPV DNA (thus leading to misclassification of the exposure) in these initial case-control studies had considerably underestimated
the relative risk for the effect of HPV infection on cervical cancer (reviewed in [31]). As the experience with HPV DNA testing methodology led to the adoption of modern assays, such as
polymerase chain reaction, the magnitude of the relative risks increased dramatically to near
triple-digit point estimates (Figure 6.3).
It was a series of large and well-conducted case-control studies by the IARC using modern
laboratory techniques that demonstrated that infection with certain HPV types is unequivocally
one the one strongest cancer risk factor ever found (Figure 6.4) [32,33]. For example, the relative
risk between tobacco and lung cancer is estimated between 7 and 15 [34], whereas the relative risk
between HPV-16 and squamous-cell cervical cancer is 435 [32]. These studies also produced
precise HPV type-specific estimates of relative risks, allowing for identification of specific types
for prevention strategies [32,35].
In 1995, the IARC expert panel classified HPV 16 and 18 as Group 1, Human Carcinogens in
its Monograph series on carcinogenicity evaluation (Table 6.1) [8]. Following the 1995 IARC
monograph was the recognition that HPV infection was not only the unequivocal central cause of
cervical cancer but that it should also be viewed as a necessary cause [9]. No other cancer prevention paradigms (e.g. smoking-lung cancer, HBV-liver cancer) have this distinction [36]. Support
for this assertion comes from the strong epidemiological evidence (Figures 6.3 and 6.4) and
the detection of HPV DNA in up to 99.7 per cent of cervical cancers from all geographic areas
[9,32,37,38]. As the evidence from new molecular epidemiologic studies came to light after 1995,
the IARC decided to reconvene its HPV expert panel which resulted in an additional 11 HPV
types to be classified as Group-1 carcinogens (Table 6.1) [16].
The empirical epidemiologic evidence concerning the carcinogenicity of different HPV types
seen in the IARC studies [32] was consistent with what molecular virologists had predicted via
HPV VACCINATION
phylogenetic relatedness analyses [39] and bioassays of oncogenic activity [40]. On the basis of
the prevalence of the different HPV types in cervical cancers from different parts of the world it
could be concluded that HPVs 16 and 18 were unequivocally the ones with the highest combined
attributable proportion. HPV-16 is the most prevalent type causing approximately 54 per cent of
cervical cancers worldwide, followed by HPV-18 which is associated with approximately 17 per
cent of cervical cancers. As shown in Figure 6.5, in combination, HPV types 16 and 18 cause about
70 per cent of all cervical cancers [35]. Other HR types such as HPV-45, -31, and -33, albeit next
in ranking, are responsible for less than 7 per cent of all cervical cancers, individually [41]. The
ranking of the HR-HPV types shown in Figure 6.5 served as rationale for the development of
the two initial prophylactic vaccines against HPV infection.
HPV vaccination
The human immune system is composed of an innate, non-specific component and an adaptive
component. Adaptive immunity is conferred by a series of highly-specialized cells that process
and prevent or eliminate specific pathogenic challenges. It may occur after either natural infection or vaccination, such that immunity is acquired. Exposure to a particular pathogen or its
antigen produces a primary immunological response involving B and T lymphocytes. This is
HPV type
16
18
45
31
52
33
58
35
59
51
56
73
68
6
11
X
Others single LR
16 + other LR
16 + other HR
1618
18 + other HR
Others double
Triple
More (4 or 5)
0.1
0.5 1
10
50 100
500 1000
5000
Odds ratio
HR: High risk LR: Low risk
Fig. 6.4 Relative risks for the association between specific HPV types and invasive cervical cancer as
estimated using the pooled data from the IARC case-control studies. These studies had improved
HPV detection methods relative to the first generation of studies. In consequence, RR estimates are
substantially higher than those in Figure 6.3.
Source of data: Muoz et al. (2003).[33], reproduced with permission from HPV Today, issue no. 4,
February 2004.
109
110
Vaccine composition %
53.5
HPV 16
HPV 18
Monovalent: 53.5
Bivalent: 70.7
Trivalent: 77.4
17.2
6.7
2.9
HPV 45
HPV 31
HPV 33
HPV 52
HPV 58
HPV 35
HPV 59
HPV 56
HPV 51
HPV 39
HPV 68
HPV 73
HPV 82
Tetravalent: 80.3
2.6
2.3
2.2
1.4
1.3
1.2
1.0
0.7
0.6
0.5
0.3
20
40
60
80
Pentavalent: 82.9
Hexavalent: 85.2
Heptavalent: 87.4
Octavalent: 88.8
Nonavalent: 90.1
Decavalent: 91.3
100
Fig. 6.5 Proportion of the global burden of invasive cervical cancers attributable to the incremental
combination of different HPV types in a hypothetical prophylactic HPV vaccine of increasing valency.
HPV 16 is the most common type, being detected in 53.5 per cent of all cervical cancers. The
second most common type is HPV 18, at 17.2 per cent. Altogether, about 71 per cent of all cervical
cancers are due to either HPV 16 or HPV 18, which forms the theoretical expectation for the
preventive benefit from immunization with a bivalent HPV vaccine containing these two types.
Source: Adapted with permission from Munoz et al. (2004). Int J Cancer. Aug 20. 111(2):27885.
followed by the development of immune memory cells, which can remember the pathogenic
antigen and can launch a rapid protective response upon re-exposure.
A vaccine is a substance that contains antigen from a particular pathogen and is administered
for the prevention or treatment of an infectious disease. Vaccine preparations may consist of live,
attenuated, or killed micro-organisms or their antigenic proteins. Prophylactic vaccines aim to
prevent infection by inducing neutralizing antibody response. Therapeutic vaccines aim to prevent proliferation of infected cells via cell-mediated immunity, thereby inducing regression. An
ideal vaccine will provide at least the same degree and duration of protection as natural infection,
without the accompanying clinical illness, with minimal side effects; and whose administration is
simple, safe, acceptable, and cost-effective [4].
Development of HPV vaccine technology

As early as the 1980s, many laboratories worldwide were studying the immune response against
HPV infection using linear epitopes, i.e. peptides derived from the nucleotide sequence of selected
HPV genes that could be candidates for inducing a protective, neutralizing immune response.
Todays successful prophylactic vaccines against HPV (see as follows) finally became a reality with
the development of a technology that produces HPV virus-like particles (VLP) via expression of
the major HPV capsid gene L1 in eukaryotic cell systems (yeast or insect cells). The expressed
capsid protein self-assembles as pentamers and 72 of the latter spontaneously join to form a structure that resembles an intact HPV virion. The VLP does not contain the viral DNA and thus it is
HPV VACCINATION
not infectious. However, the ordered arrangement of epitopes in the VLP makes this formulation
highly immunogenic. The VLP technology has its roots in research by Robert Garcea in Colorado
on polyomaviruses, which are closely related to HPVs [42,43]. Later, Zhou and colleagues in
Brisbane, Australia, conducting work inspired and co-authored by Ian Frazer were the first to
show in 1991 that the L1 (major) and L2 (minor) capsid genes of HPV 16, when expressed in a
eukaryotic cell system, coded for the proteins that spontaneously self-assemble as VLPs [44].
Subsequently, the VLP technique was perfected and it was demonstrated that VLPs were highly
immunogenic, inducing high titres of neutralizing antibodies. L1 alone can self-assemble into
VLPs but L2 cannot; therefore, the first HPV vaccine candidates, including the current commercially available ones, consist of L1-based VLPs [45]. The historical account concerning the development of this research has been recently summarized by Frazer in a commentary [46].
The 1995 IARC monograph labelling HPV-16 and -18 as Group 1, Human Carcinogens [8]
gave pharmaceutical companies the needed body of evidence to allow them to take the financial
risks in developing and field-testing candidate HPV vaccines. Variations of the L1-based VLP
technology were subsequently adopted as formulations by Merck & Co., Inc. and GlaxoSmithKline
Biologicals as candidate prophylactic vaccines against HPV in the mid-1990s. Following another
decade of research and development, two highly efficacious vaccines that prevent HPV infection
and cervical pre-cancers became available. These are Gardasil (Merck & Co., Inc., NJ, USA) and
Cervarix (GlaxoSmithKline Biologicals, Rixensart, Belgium).
Table 6.2 describes the main characteristics of the two commercially available HPV vaccines.
Cervarix is a bivalent vaccine that targets the two HPV types (16 and 18) that are attributed to
70 per cent of cervical cancers worldwide. Gardasil is a quadrivalent vaccine that targets types 16
and 18 as well as two additional types, 6 and 11, which are responsible for 90 per cent of genital
warts. Both vaccines utilize recombinant technology to produce L1 VLPs but are based on different expression systems. The vaccines differ in their quantity of VLPs and their adjuvant systems.
AlSO4, the adjuvant used in Cervarix is supposed to yield an enhanced immunologic response
with production of neutralizing antibodies [47]. The rationale behind the two vaccines also
differs [48]. For the bivalent vaccine, the rationale was to focus on the oncogenic types 16 and 18
and produce a strong, sustained immune response. For the quadrivalent vaccine, the rationale
was also to provide immunity to the two most important oncogenic types, and further to prevent
infection with the two non-oncogenic types that cause most genital warts and recurrent respiratory papillomatosis.
Table 6.2 Characteristics of currently-available prophylactic human papillomavirus (HPV) vaccines

Characteristic
Cervarix
Gardasil
HPV types included
16, 18 (bivalent)
6, 11, 16, 18 (quadrivalent)
Dose of L1 protein
20/20 g
20/40/40/20 g
Expression system
Insect cells (baculovirus)
Yeast
Adjuvant
AlSO4 (proprietary)
Aluminum hydroxy phosphate sulfate
Injection schedule
0, 1, 6 months
(0.5 ml, intramuscular)
0, 2, 6 months
(0.5 ml, intramuscular)
Follow-up data available
5.5 years (Phase II)

15 months (Phase III)
5 years (Phase II)

3 years (Phase III)
111
112
Clinical trial evidence for vaccine efficacy

Phase II and III randomized controlled trial results are available for both the bivalent and quadrivalent vaccines [4954]. Because of the inherent differences in study designs and methods used
by the two vaccine teams, it is a daunting task to summarize efficacy results for both virological
and lesion endpoints. The following section and Table 6.3 provide a brief summary of interim
results as of mid-2008. At this writing, all trials are still ongoing and final analyses have not yet
been conducted. Recent in-depth reviews of the vaccine formulations, study methods, and trial
findings have been published elsewhere [28,47,5557]. In short, both vaccines have been proven
to be highly efficacious.
The preventive impact of a vaccine is quantitatively expressed as vaccine efficacy, which is the
percentage reduction in the number of cases among vaccinated individuals relative to placebo. An
overview of vaccine efficacy results is provided in Table 6.3. The initial phase II trials were aimed
at studying efficacy among healthy young women with no evidence of current or past infection
with the HPV types included in the vaccine formulation. Exclusionary criteria for enrolment,
randomization, and/or efficacy analysis included report of seven or more (bivalent) or five
or more (quadrivalent) sex partners in lifetime, abnormal cytology (bivalent), presence of
antibodies to the targeted HPV types, and presence of HPV-DNA of the targeted HPV types
Table 6.3 Overview of vaccine efficacy results in human papillomavirus (HPV) vaccine Phase II and
III trials
Endpoint
Cervarix
Gardasil
Vaccine efficacy Analysis Reference
Vaccine efficacy
Analysis Reference
Vaccine efficacy for various endpoints among susceptible women (i.e. with no evidence of current or past
infection at study entry)
4 month persistent
cervicovaginal
infection or disease
associated with HPV
6/11/16/18
Not reported
90% (7197)
89% (7396)
ATP
MITT
[51]
[51]
6 month persistent
96% (75100)
cervical infection with 94% (7899)
HPV 16/18
80% (7087)
ATP
ITT
MITT
[50]
[50]
[52]
Not reported
CIN1+ caused by
HPV16/18
89% (5998)
MITT
[52]
100% (<0100)
100% (32100)
ATP
MITT
[51] [55]*
[51] [55]*
CIN2/3+ caused by
HPV 16/18
90% (5399)
MITT
[52]
98% (86100)
95% (8599)
ATP
MITT
[54]
Vaccine efficacy regardless of infection status at study entry or during course of vaccination
CIN2/3+ caused by
HPV 16/18
Not reported
44% (2658)
ITT
[54]
Vaccine efficacy shown as the percentage reduction in the number of cases among vaccinated
individuals, with 95% confidence interval given in brackets.
CIN, cervical intraepithelial neoplasia. ATP, according-to-protocol analysis. ITT, intention-to-treat analysis.
MITT, modified intention-to-treat analysis.
*95% confidential interval reported by Schiller et al. [55] using Phase II data [51].
HPV VACCINATION
(quadrivalent) or any HR-HPV types (bivalent) at or before study entry [57]. High (over
80 per cent) vaccine efficacies against incident HPV infection, persistent infection, abnormal
cytology and disease were observed in both according-to-protocol (ATP) and (modified)
intention-to-treat (ITT) analyses [4951,57].
A Phase II efficacy trial of Gardasil among young men was underway at the time of writing,
but results are not yet available. This trial will assess vaccine efficacy, safety, and immunogenicity
in young men using the endpoints of HPV infection, and genital warts [55]. Among participating
men who have sex with men, a further endpoint of anal dysplasias will be evaluated [55].
Phase III trials among women have been considerably larger in size (>18,000) than the Phase II
trials, and thus were better suited to investigate disease endpoints for vaccine efficacy [52,54].
Participants ranged from 15 to 26 years of age and reported four or fewer sex partners in their
lifetime at enrolment. Unlike the phase II trials, women in phase III trials were not necessarily
excluded if they had current HPV infection or evidence of past infection, indicated by detection
of antibodies for the targeted HPV types. This inclusion allows for the assessment of vaccine efficacy as it might be expected in the general population, and according to a variety of characteristics
related to infection status, serostatus and disease state [47].
Interim results from these phase III trials have been reported [52,54] and follow-up of participants for at least four years is going on. In the according-to-protocol (ATP) analyses, vaccine
efficacy was greater than 90 per cent against persistent infection, abnormal cytology, and disease
related to the targeted HPV types (Table 6.3). ATP analyses were generally limited to women who
were DNA-negative and sero-negative to the vaccine-targeted types at study entry, who received
all three vaccine doses, who had no protocol violations, and who remained DNA-negative during
the full course of vaccination (bivalent) or until one month after the last injection
(quadrivalent).
Modified ITT analyses of the phase III trials included women who received at least one dose but
excluded women who were HPV DNA positive for a targeted type at enrolment. This modification to the ITT approach was done to investigate the effect of vaccine in a susceptible population.
These analyses provided somewhat lower estimates of vaccine efficacy than the per-protocol
analyses, likely due in part to the inclusion of women who did not receive all three injections.
Nevertheless, most still indicated high efficacy (Table 6.3) [52,54]. Results from these modified
ITT analyses reflect what might be achieved in a universal vaccination programme that opted to
vaccinate girls prior to initiation of sexual activity, and thus prior to HPV exposure.
ITT analyses from the Phase III studies would be expected to have the lowest estimates of
vaccine efficacy, since these included women regardless of their infection status at enrolment.
These estimates give a sense of what might be expected upon administration of vaccine to the
sexually-active general population irrespective of whether or not there has been exposure to
HPV, which is not the intended policy for HPV vaccination guidelines. Results of such an analysis
are available from the phase III trial for Gardasil (Table 6.3) [54]. Twenty-seven per cent of
study participants were HPV DNA-positive and/or sero-positive for the vaccine-related types
at study entry. When these women were included in the analysis, vaccine efficacy was 44 per cent
(95 per cent CI 26-58) against CIN2 or higher-grade lesions (CIN2+) caused by HPV 16/18
and 17 per cent (95 per cent CI 1-31) against CIN2+ caused by any HPV type [54]. These lower
efficacy results are not surprising given that neither the bivalent nor quadrivalent vaccines
showed evidence of efficacy against clearance or disease progression in women who were already
infected with HPV 16 or 18 at enrolment [47]. That is, no therapeutic effect was observed.
Nonetheless, even among women who were already infected with between one and three HPV
types targeted in the quadrivalent vaccine, there was still protection against infection with the
remaining type(s) [58].
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114
The safety profiles of both vaccines have been shown to be similar to other non-infectious
protein subunit vaccines such as tetanus or hepatitis B vaccine [47,55,56]. Immediate local adverse
events were commonly pain, erythema, and swelling at the injection site. Systemic symptoms
such as fever, myalgias, headaches, and gastrointestinal irritability were reported but did not
significantly differ between study groups. The proportions of serious or pregnancy-related adverse
events were also equivalent between study groups.
Both the bivalent and quadrivalent vaccines are highly immunogenic [47,55]. Seroconversion
rates are 100 per cent one month after administration of all three doses, with peak geometric
mean antibody titres (GMT) typically 100-fold higher than those resulting from natural infection.
Over time, GMTs decline to a plateau at least 10-fold higher than that seen in natural infection,
with no indication of a decline five years post-vaccination. Furthermore, there is evidence of a B
cell memory response, which would be required for long-term immunity [47,55]. Immunogenicity
as well as safety has also been documented among women outside the age range of the phase II
and III clinical trials (i.e. girls aged 914 and women aged 2755 years) [47]. The quadrivalent
vaccine is similarly immunogenic and safe among boys aged 9 to 16 years [55].
The currently-available HPV vaccines were specifically designed to target a limited number
of HPV types (bivalent: 16, 18; quadrivalent: 6, 11, 16, 18). Nevertheless, there is a biological basis
for cross-protection against other types, and preliminary clinical evidence for cross-protection
against types 31 and 45 is emerging [47,55,59]. Confirmatory evidence for the extent of crossprotective efficacy and its duration is eagerly awaited. The fact remains that an ideal HPV vaccine
would be able to induce strong immunity against a broad spectrum of types.
Given the evidence for efficacy, safety, and immunogenicity that emerged from the phase II and
III clinical trials and bridging studies, the two HPV vaccines have been licensed for use in over
80 countries in the world, including a US FDA license (Gardasil) and European Medicines
Agency (EMEA) licenses [48].
Implementation of HPV vaccination

The licensure of HPV vaccines prompted a broad discussion regarding the most appropriate
public health policy for whether and how to implement these vaccines in many countries throughout the world [60,61]. The key issues are cost, target age for vaccination, and concerns regarding
vaccination for a sexually-transmitted infection [48]. Currently, the cost of HPV vaccine far
exceeds the financing abilities of developing countries and most middle-income countries, many
of which have the highest rates of cervical cancer globally. Immediately following approval, the
costs in the United States were around $300 to $500 for the three doses needed, but different
purchasing agreements and competition from the second vaccine have led to costs of around
$150 or perhaps lower; agreements in different countries are often confidential. International
agencies (e.g. the Global Alliance of Vaccines and Immunization, the Pan American Health
Organization Revolving Fund, UNICEF) will play an important role in easing the introduction
and implementation of vaccines to developing countries [48,60,62]. Centralized procurement via
these international mechanisms could result in far more affordable prices. Moreover, as seen with
HBV, the cost of vaccination will gradually decline during the next decade, presumably to levels
that will permit cost-effective deployment to developing countries.
The most appropriate age for vaccination must be balanced between what is expected to have
the most health impact and what is most feasible given existing public health infrastructure.
Currently, there is agreement that vaccination should occur prior to sexual initiation, or soon
afterwards, i.e. pre-adolescent and adolescent girls [60]. This strategy is feasible in some developed countries that already have successful school-based vaccination programmes for this age
IMPLEMENTATION OF HPV VACCINATION
group (e.g. HBV vaccine), but in other countries an adolescent programme would be a considerable challenge [60]. Conversely, infant vaccination programmes are universal and could have
far greater impact for HPV and cervical cancer prevention, should immunity induced by these
vaccines prove to be long-lasting [48].
Because HPV is a sexually transmitted virus, a unique set of concerns arise, particularly among
conservative cultures in which sexuality among young people and/or the unmarried is taboo [48].
Some fear that HPV vaccines would increase sexual activity among youth, perhaps hastening
sexual initiation, as it would send a message that society encourages or at least tolerates adolescent
sex. These arguments against HPV vaccination are analogous to similar concerns that have been
raised regarding sex education programmes or condom distribution among adolescents;
however, there is strong evidence that such programmes result in safer sex behaviours or even
delayed engagement in sexual activity [63]. This highlights the importance of incorporating
broader sexual health counselling in adolescent-based HPV vaccination programmes, which
could similarly address concerns that vaccination would adversely affect condom promotion and
other safer sex messages [4]. Another argument against vaccination has been that a girl who
would only have sex with one partner, her husband, would not be at risk of HPV infection and
cervical cancer. Yet rates of acquisition are high in womens first sexual relationships [23].
Furthermore, in many parts of the world men report more partners than women, both before and
after marriage, meaning that having sex with only ones husband does not eliminate the risk of
HPV exposure [64]. A vaccine strategy targeted only towards women who have multiple partners
(or other high-risk groups such as patients attending STD clinics) is likely to fail, given the lessons
learned from attempts to implement hepatitis B vaccine in this fashion [4] and the fact that HPV
vaccination is only maximally effective before HPV exposure. This past experience led to the
conclusion that universal vaccination of young adolescent girls must be the goal of any HPV
vaccine implementation strategy [48].
Long before efficacy data became available from clinical trials, public health researchers began to
project the public health and economic impact of HPV vaccines under various implementation
strategies [65]. As these vaccines became reality, research activity in this arena expanded exponentially [6671]. Encouragingly, findings have been largely consistent across models. Models project
that HPV vaccines would have a substantial impact on reducing HPV infections and cervical cancer,
particularly in developing countries with no screening programmes. Vaccine implementation could
be extremely cost-effective in scenarios in which the per-woman cost of vaccination is under $25,
and/or when existing cervical screening strategies are modified (see next section). These mathematical models depend on a set of assumptions regarding the epidemiological parameters for HPV
infection, progression to cervical pre-cancers and cancer, and long-term vaccine-induced immunity. Although many of these parameters have good estimates for various populations, uncertainties
remain. One of the most influential parameters is the duration of protection that is provided by
the vaccines, which is currently unknown. Observing the extent and duration of vaccine-acquired
as well as naturally-acquired HPV immunity is a research priority.
Although vaccine efficacy among males is not yet known, the use of Gardasil among adolescent
boys has been approved in the European Union, Australia, and elsewhere [55] for reasons of
gender equity, although publicly funded vaccination is only available for girls. The benefit of vaccinating boys is a debated issue, which will only intensify should male vaccination prove to be
efficacious. Prevention of HPV-related outcomes among males would be to their direct health
benefit; nevertheless, HPV-related cancers are far rarer among men than they are in women. Male
vaccination may also benefit women through herd immunity, in that it could break the chain of
heterosexual HPV transmission in a population. Assuming 100 per cent protection in preventing
HPV infection by the target types, models have only shown a cost-effective benefit of vaccinating
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116
boys when vaccine coverage among girls is low. Therefore, some argue that targeting resources to
achieve high vaccine coverage in girls may prove to be more productive [55].
Cervical cancer screening and the projected

impact of vaccination
Pap test screening as the mainstay of cervical cancer control
Following its introduction in or before the 1960s in many countries, the Papanicolaou cytology
technique (Pap test) is undoubtedly the cancer screening test with the best record of accomplishments in contemporary medical practice [11]. Pap test screening targets the detection of preinvasive cervical neoplastic lesions, thereby allowing close monitoring of equivocal or low-grade
abnormalities on repeat tests or immediate referral for colposcopy, biopsy, and treatment of high
grade or more severe lesions. This strategy permits preventing cervical cancer by arresting
neoplastic development within the cervical epithelium before it becomes invasive.
Organized or opportunistic Pap screening has been the primary reason for the substantial
reductions in cervical cancer morbidity and mortality in high-income countries. However,
the economic burden imposed by cervical cancer screening is substantial. In most Western
countries, for each new case of invasive cancer found by Pap cytology there are approximately
50 to 200 other cases of abnormal smears consistent with equivocal atypias or precursor lesions,
which require triage and clinical management. Overall, these secondary screening activities
impose a great financial burden on the health care system of countries that maintain cervical
cancer screening programmes.
Most developing countries have yet to derive the same benefit from Pap test screening that
developed countries have experienced, either because programmes have not been implemented at
all or were instituted without the entire chain of components of quality assurance and follow-up
procedures that are necessary for screening to be effective. As a result, incidence of cervical cancer
has continued to increase in many Latin American, African, and Asian countries, possibly due
also to the liberal changes in sexual mores that began in the 1960s that led to more widespread
HPV transmission. Furthermore, the reductions in cervical cancer morbidity seen in many
western countries have begun to stabilize which brings a sense of diminishing returns.
In spite of its success in developed countries, Pap cytology has important limitations related to
the inherently subjective interpretation of morphologic alterations in cervical samples, sampling
variation, and fatigue that results from the repetitive nature of reading smears. In consequence,
the sensitivity of Pap cytology to detect high-grade CIN or invasive cervical cancer is relatively low
at 51 per cent, whereas its specificity is considered high, at 98 per cent [72]. Therefore, the Pap
tests high false negative rate is its most critical limitation. The advent of liquid-based cytology
techniques has contributed to mitigate the problem of efficiency in processing cervical samples
but the limitations of cytology remain the same [73]. This low sensitivity for an individual testing
opportunity has to be compensated by the requirement to have women entering the eligible
screening age-range with an initially negative smear to repeat their tests at least twice over the
next 2 to 3 years before they can be safely followed as part of a routine screening schedule. This
effectively brings a programmes sensitivity to acceptable levels but safeguards must be in place
to ensure compliance, coverage, and quality; costly undertakings that have worked well only in
western industrialized countries.
Cervical cancer screening post-vaccination

Despite the enthusiasm regarding the prospect from HPV vaccination, cervical cancer screening
must continue after vaccination for a number of reasons. First, both vaccines are effective as
CERVICAL CANCER SCREENING AND THE PROJECTED IMPACT OF VACCINATION
pre-exposure prophylaxis for disease caused by HPV-16 and -18; however, women currently
infected with these viruses may not derive any benefit [74]. Moreover, the target types included
in the two vaccines are causally linked to about 70 per cent of all cervical cancers (Figure 6.5) [35];
therefore, even in a scenario of 100 per cent vaccine effectiveness and 100 per cent vaccine coverage, screening would still be necessary to detect lesions caused by other HR-HPV types. Although
some degree of cross-protection against infection with phylogenetically-related HPVs (e.g. HPVs
45 and 31) has been observed [47], there is also a possibility of an increase in prevalence of
other HPV types in vaccinated populations, as a result of the vacated ecologic niches following
the progressive elimination of HPVs 16 and 18 (a yet unproven phenomenon known as type
replacement). There is also the possibility that the type-specific immunity conferred by vaccination may wane over periods extending beyond five years.
Despite these caveats, a vaccinated woman may experience much lower risks of developing
pre-cancerous lesions over a period that may extend for a decade or longer. Subsequent intensive
screening via annual or biennial Pap cytology may waste resources while providing only marginal
additional benefit beyond that conferred by immunization during a womans main reproductive
years. Implementation of HPV vaccination will impose a substantial burden on the health
budgets of most countries. Proper planning of cervical cancer screening, an intervention that
represents today a key healthcare expenditure, may help offset the costs that will stem from
vaccination.
Expected impact of vaccination on screening practices

As the successive cohorts of vaccinated young women reach screening age there may be a gradual
reduction in cervical lesion prevalence. Decreases in colposcopy referral rates to about 40 per cent
to 60 per cent or less of the existing case loads in most Western countries are plausible, judging
from attributable proportion estimates [75] and preliminary findings from vaccination trials
[76]. Such reductions are likely to translate into initial savings to the health care system or to
individuals. It is expected that the vaccine-induced decrease in cervical lesion prevalence may lead
to a degradation of Pap cytology performance (because of a decreased expectation of abnormalities on a days smear workload) and a decline in the positive predictive value of Pap cytology (due
to reduced lesion prevalence) [77,78].
In the longer term, a statistically noticeable reduction of the burden of cervical cancer via HPV
vaccination is unlikely to be observed for at least 10 to 15 years even if vaccine coverage is high
because of the dual facts that vaccination below age 20 will not affect high grade CIN rates appreciably for 5 to 10 years and another 5 to 15 years will be necessary for this to be translated into
reductions in cancer incidence. A paradoxical situation may arise if vaccine uptake is higher or
happens exclusively among women who will eventually be adherent with screening recommendations. If adolescents and young women who are more likely to be vaccinated are also the ones
destined to be screened regularly, the reduction in incidence of cervical abnormalities will happen
nearly exclusively among such women. The fact they will benefit from screening makes them less
likely to develop cervical cancer even if they had not been vaccinated, because any pre-cancerous
lesions may eventually be found and treated. On the other hand, young women who were not
vaccinated because of inability to pay may also be less likely to be screened and their undetected
lesions will progress until invasion occurs, when the associated symptoms will then lead them to
seek medical attention, which will then reveal cervical cancer [77]. This undesirable scenario of
compounded social inequity is unlikely to occur in countries that already enjoy the benefits of
an organized screening programme that reaches all women. Such high-income countries are
also likely to adopt an organized and universal vaccination programme that benefits all segments
of society.
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118
New screening options following HPV vaccination:

HPV DNA testing
HPV DNA testing in cervical cancer screening largely circumvents the limitations of Pap test
screening, and has other advantages in a post-vaccination world [79]. HPV testing has much
higher sensitivity than cytology but only slightly lower specificity in women 30 years or older
[8083]. Furthermore, HPV DNA testing is reproducible for large-scale implementation
and eliminates the subjective interpretation of cytology. Adoption of this method could potentially lengthen the screening intervals and have fewer quality control requirements, which would
result in more affordable and sustainable screening, particularly in developing countries.
Randomized controlled trials of HPV testing in primary cervical cancer screening are currently
ongoing and many have already provided results in support of this methods superior performance in detecting cervical cancer precursors with a greater margin of safety than Pap cytology
(reviewed in [78]).
HPV DNA-based cervical cancer screening would also serve the purpose of a surveillance
mechanism post-vaccine implementation, thus allowing an efficient and low-cost strategy
to monitor long-term protection among vaccinated women while providing the benefit of
continued screening. As HPV typing becomes incorporated in future HPV assays there will be
an improved opportunity to manage HPV positive cases and to gain insights into the long-term
effectiveness of vaccination [77].
Simply making cytology screening less frequent may not be a viable strategy to achieve a costeffective combination of vaccination and screening. The anticipated reduction in the prevalence of
pre-cancerous lesions requires rethinking the optimal screening approach. This decline in prevalence will necessarily result in a lower positive predictive value of both Pap and HPV screen tests.
However, the accuracy of Pap tests is expected to be more adversely affected because it is prone to
the vagaries of subjective interpretation, particularly in conditions of low lesion prevalence [78].
Conversely, HPV testing has the screening performance characteristics that would make it an ideal
primary cervical cancer screening test in such conditions. Pap cytology should be reserved for
triage settings, i.e. in assisting management of HPV positive cases. Among HPV-positive patients,
the prevalence of pre-cancerous lesions will be high, leading to enhanced accuracy of the Pap test
[78]. The advantages of the proposed approach have been described elsewhere [77,78] and are
being evaluated in Finland [84], Northern Italy [85], and in British Columbia, Canada.
Expected impact on other HPV-associated cancers

HPV has been implicated in the development of malignancies of other anogenital sites besides the
cervix including vagina, vulva, penis, and anus [20]. Unlike cervical cancer, in which 100 per cent
of cancers are caused by HPV, cancers of other anogenital sites show lower risk attributions for
HPV. It is estimated that 90 per cent of anal cancers, and 40 per cent of vaginal, vulvar, and penile
cancers are attributable to HPV [1]. It is also thought that HPV may cause a substantial proportion of other anogenital malignancies and those of the upper aero-digestive tract [20].
Vaginal and vulvar cancers

Cancer of the vagina is extremely rare with an average incidence rate of approximately 1 new case
per 100,000 women per year worldwide [86]. HPV seems to play a central role in the causal pathway. HPV-DNA is detected in 64 per cent to 91 per cent of vaginal cancers and 82 per cent to
100 per cent of their precursor lesions (vaginal intraepithelial lesions of grade 3) and HPV-16
appears to be the most prevalent type [87]. The model of vaginal cancer pathogenesis is very
EXPECTED IMPACT ON OTHER HPV-ASSOCIATED CANCERS
similar to that of cervical cancer and indicates the central role of HPV as the central sexuallytransmitted agent [20]. Women with primary vaginal carcinoma are more likely to have been
previously diagnosed with an anogenital tumour, particularly of the cervix [88].
Invasive squamous cell carcinoma of the vulva is relatively rare at slightly less than 5 per cent
of all female genital tract malignancies but its incidence has increased over the past 30 years,
especially in young women [89]. Approximately 60 per cent of vulvar cancers contain HPV
DNA, particularly of HPV-16 [16,90]. However, there seem to be two distinct, age-dependent
risk factor profiles for vulvar cancer [20]. Those affecting older women tend to be keratinizing
squamous cell carcinomas and are rarely associated with HPV (less than 10 per cent). Vulvar
cancers that have an early age of onset tend to be warty or basaloid carcinomas and constitute
an HPV-related subgroup of tumours (60 per cent to 90 per cent are positive for HPV) [87].
These HPV-positive tumours seem to have become more frequent in recent decades and tend to
have the same risk profile as other HPV-related anogenital cancers, i.e. association with high-risk
sexual behaviours [20].
Findings on the efficacy of vaccination in preventing vaginal and vulvar pre-cancerous lesions
with the quadrivalent vaccine [Gardasil] are available [91]. Evidence suggests that the quadrivalent vaccine is highly effective against vulvar and vaginal intraepithelial neoplasia over a mean
follow-up of 3 years. In the according-to-protocol analysis, vaccine efficacy was 100 per cent
(95 per cent CI 72-100); this analysis was restricted to susceptible women who were HPV 16/18
DNA-negative and sero-negative to HPV 16/18 at study entry, who remained DNA-negative
throughout the vaccination period, received all three doses, and did not violate the protocol [91].
The intention-to-treat (ITT) analyses estimated vaccine efficacy of 71 per cent (95 per cent
CI 37-88) for lesions associated with HPV 16/18, and 49 per cent (95 percent CI 18-69) against
lesions regardless of HPV type detected. These encouraging results suggest that the umbrella of
protection conferred by HPV vaccination may be wide enough to potentially prevent all female
lower genital tract cancers associated with the vaccine-targeted HPV types.
Penile cancer
Most penile cancers are squamous cell carcinomas and are a very rare disease in developed
countries in Europe and North America, where incidence rates vary between 0.3 to 1 case per
100,000 men-years. Incidence is higher in parts of Africa (Uganda), Asia, and South America
(Brazil and Colombia) at up to 4 cases per 100,000 men-years [92]. The exact etiologic mechanisms that lead to the development of penile cancer are largely unknown although the assumed
attributable risk for HPV is 40 per cent [1]. Similarly to vulvar cancer, basaloid or warty penile
carcinomas are most likely to contain HPV DNA (up to 100 per cent), whereas the more common
keratinizing carcinomas have a lower HPV prevalence (30 per cent to 40 per cent) [93]. HPV-16
is also the most prevalent type in HPV-related penile cancer [94].
Clinical evidence for the efficacy of HPV vaccines in preventing penile cancer is not anticipated
to become available from clinical trials among men due to the rarity of this cancer. Unlike
pre-invasive lesions of the vulva and vagina, which serve as acceptable endpoints for judging
vaccine efficacy, identification of penile intraepithelial neoplasia is yet to be widely used in
practice, and thus no surrogate endpoints for vaccine efficacy are available for penile cancer.
Any population-based impact will be documentable only during post-vaccination surveillance.
Even in populations that opt to vaccinate only females, rates of penile cancer may decline as
a secondary outcome of reduced HPV infection among women and less opportunity for transmission to male partners. It has been known that men are more likely to develop pre-cancerous
lesions of the penis that are associated with HPV when their partners have cervical intraepithelial
neoplasms [95].
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120
Anal cancer
Anal cancer is relatively rare although the incidence among both men and women has increased
by more than two-fold over the last 40 years [96]. Globally, nearly 100,000 new cases of
anal cancer were reported in 2002 [10]. Rates of anal cancer are considerably higher among
homosexual men [97]. Similarly HIV-positive men and women, transplant recipients, and
women with cervical squamous intraepithelial lesions are at a higher risk than the general
population [96,97].
HPV is detected in 83 per cent to 95 per cent of anal cancers, with an attributable risk estimate
of 90 per cent [1]. As in cervical cancer, HPVs 16 and 18 are the most common types in anal carcinoma specimens. The model of anal cancer pathogenesis is very similar to that of cervical
cancer. HPV infection is associated with the development of low- and high-grade anal precursor
lesions, with eventual progression to invasive anal cancer.
Given the similarity between cervical and anal carcinogenesis, the efficacy of HPV vaccines in
preventing anal pre-cancers and cancer is expected to be analogous to findings for cervical lesions,
although clinical data are not yet available. Results from the ongoing Gardasil vaccine trial in
homosexual men will be particularly revealing regarding efficacy against anal pre-cancers [55].
Head and neck cancer

In 2002, head and neck cancer (cancers of the oral cavity, pharynx, and larynx) was ranked as the
sixth leading cause of cancer deaths worldwide, with extensive variation by sex and geographic
region [10]. However, the results of many studies suggest that head and neck cancer, particularly
oral tongue cancer, is increasing in young adults internationally [98].
Evidence supports the idea that head and neck squamous-cell carcinoma is a multi-factorial
disease with at least two distinct pathogenesis models, a dominating one involving smoking and
alcohol consumption, and the other driven by HPV [99]. An average of 40 per cent of cancers of
the oral cavity and pharynx are HPV-positive, and attributable risk per cents are 5 per cent and
16 per cent, respectively [1]. The association is strongest in the oropharynx, particularly in the
tonsil [100,101]. Sexual activity has been associated with increased risk and husbands of women
who had cervical cancer are more likely to be diagnosed with these cancers [102]. Among HPVpositive head and neck cancers, HPV-16 and HPV-18 are most prevalent [87].
Ongoing vaccination trials have not included a protocol for identifying the onset of oral
pre-cancerous lesions among study participants. Moreover, classification schemes for such precancerous lesions are not yet widely used, particularly among young women, the main group
included in vaccine trials and demonstration projects. This population group has very low risk
of developing such oral lesions. Therefore, it is only via cancer surveillance post-vaccination
deployment that it will be possible to ascertain any possible impact on head-and-neck cancers.
Any such impact is not expected to be verifiable before a decade or more has passed since HPV
vaccination.
Future developments in HPV vaccines

Outstanding research questions for current HPV vaccines
A multitude of research questions regarding the current bivalent and quadrivalent HPV
vaccines are being posed by researchers and public health officials. In the very near future, updated
results from the phase III trials are expected to become available. These findings will be important
for more precise estimates of vaccine efficacy with longer follow-up of trial participants. Results
from the phase II efficacy trials of the quadrivalent vaccine among males are also eagerly
anticipated.
FUTURE DEVELOPMENTS IN HPV VACCINES
One of the key research questions is the duration of vaccine-induced immunity, a most influential variable in cost-effectiveness analyses. Only long-term follow-up of trial participants, large
community-randomized trials, and phase IV surveillance post-introduction will determine
whether induced immunity is long-lasting or if a booster will be required to maintain protective
antibody titres. Such long-term data will also establish the minimum level of antibody titres
required for immunity (a correlate of protection), which is unknown at this point. These studies
will also provide data on long-term safety and cross-protection against HPV types not included
in these vaccines.
Large community-randomized trials of HPV vaccination, such as those ongoing in Finland,
will be ideal to investigate herd immunity [103], which is the phenomenon in which infectious
disease spread may cease in a population, even though all are not immunized. As the proportion
of immune individuals in a population rises, there are fewer opportunities for contacts between
infected and susceptible persons. Therefore, less than 100 per cent vaccine coverage may still
result in elimination of a pathogen. Many mathematical models have explored the extent of protection that may be achieved with various levels of vaccine coverage among girls alone, or among
girls and boys [103]. The large community-randomized trials will be instrumental to determine
whether the modelled effects hold true with empirical data [103].
There has been theoretical concern that elimination of some, but not all, circulating HPV types
could lead to type replacement, in which the ecological niche vacated by HPV types 16 and
18 would simply be filled by other HR-HPV types. Although there is little biological plausibility
for type replacement, this must be verified empirically in long-term studies [103]. Thus far, epidemiologic studies have not provided evidence that HPV types compete for specific ecological
niches [104].
The most dramatic potential for an impact on cervical cancer rates will be in developing countries, many of which have only partial, ineffective, or absent screening programmes. In addition
to cost barriers, the current VLP vaccines require refrigeration at 4C and this may challenge their
implementation in some developing countries [45]. New vaccine technologies eliminating the
need for cold chain storage will be helpful for global efforts.
Second generation vaccines

The two currently available vaccines, Gardasil (Merck & Co., Inc., NJ, USA) and Cervarix
(GlaxoSmithKline Biologicals, Rixensart, Belgium), are based on L1 VLP technology and were
designed to target specific HPV types 16 and 18 (and additionally 6 and 11 in Gardasil). Although
some evidence of cross-protection against HPV types 31 and 45 is emerging, it would be desirable
to broaden protection to additional oncogenic types. Availability of an HPV vaccine that
prevented the full spectrum of HPV types that can cause cancers would be the ultimate cancer
control strategy by obviating the need for screening programmes in the future.
One option is using polyvalent L1-based VLP vaccines that would target additional HR-HPV
types. Merck is exploring this possibility with an octovalent vaccine against types 6, 11, 16, 18, 31,
45, 52, and 58 but results are not available yet [45]. Another option is an L2-based VLP vaccine,
which could generate broad-spectrum antibodies against all alpha-papillomavirus types, eliminating the need for an approach targeted to specific types; such an L2-based vaccine is currently
in development [45].
A critical caveat of prophylactic HPV vaccination is that it is ineffective against infections that
have already become established, either productive or latent. Therefore, development of therapeutic HPV vaccines is a worthwhile pursuit. There is feverish research activity to this end, with
many promising candidate vaccines, but, so far, few formulations have reached the stage of Phase
II trials [45,105]. Ultimately, the availability of one or more efficacious therapeutic vaccines will
contribute a key supplemental strategy towards the goal of cervical cancer eradication.
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122
Conclusion
There is cautious optimism that universal implementation of HPV vaccination as pre-exposure
prophylaxis of young adolescent women is likely to exert maximal impact on the future burden
of cervical cancer in most countries. Optimism is without reservation when it comes to projections for developing countries, in which the beneficial impact is expected to be greater. There is
also consensus that vaccination will not reduce risk of cancer for most women who are already
genitally exposed to HPVs of the vaccine-targeted types.
Policymakers should not be misled by the promises of the new preventive technologies. A key
objective for cervical cancer control is that the protection by HPV vaccination (based on todays
technology which does not provide protection against all HR-HPVs) must be supplemented by
the protection given by screening. Improper implementation of screening or relaxation of its
safeguards may have a deleterious effect. As discussed in this chapter, worrisome scenarios may
emerge as a result of misguided policies. For instance, uptake of vaccination mainly by the wrong
age groups may occur if countries delay implementing universal vaccination of girls but aggressive marketing of vaccines leads to high uptake among older women who are already assiduous
clients of screening. If the latter situation is eventually compounded by lower screening coverage,
or relaxation of quality control activities required in screening programmes, cervical cancer rates
may actually increase. Another concern is that countries may feel pressured to decrease expenditures needed to maintain cytology screening immediately following the investments committed
to HPV vaccination. The cancer control dividends from HPV vaccination will take two or more
decades to be realized via appreciable reductions in cervical cancer incidence. However, it is relatively easy to immediately lose the gains in reduction of disease burden that comes from screening. Policymakers in both high- and low-resource settings are urged to consider that primary
(vaccination) and secondary (screening) prevention act by intervening at different points in the
natural history of cervical cancer and imply actions in women of different ages. The constant
changes in technology may pose a challenge to proper policy-making. As indicated in this
chapter, the existing cytology screening paradigm will need to be re-considered post-vaccination
in light of the strong evidence that is now available concerning the superiority of HPV DNA
testing. To avoid missteps countries are urged to enforce only evidence-based decisions that are
accepted by all stakeholders in the multi-disciplinary blend of disciplines that now characterizes
cervical cancer prevention.
Acknowledgements
ANB is recipient of a pre-doctoral research studentship from the National Cancer Institute
of Canada and the Canadian Cancer Society (NCIC/CCS). Funding for the HPV and cervical
cancer research programme in the authors unit has been provided by multiple grants from the
Canadian Institutes of Health Research, US National Institutes of Health, and NCIC/CCS.
Supplemental unconditional funding has also been provided by Merck-Frosst for projects
unrelated to HPV vaccination.
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52 Paavonen J, Jenkins D, Bosch FX, et al (2007). Efficacy of a prophylactic adjuvanted bivalent L1
virus-like-particle vaccine against infection with human papillomavirus types 16 and 18 in young
women: an interim analysis of a phase III double-blind, randomized controlled trial. Lancet,
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53 Garland SM, Hernandez-Avila M, Wheeler CM, et al (2007). Quadrivalent vaccine against human
papillomavirus to prevent anogenital diseases. New Engl J Med, 356:192843.
54 Villa LL, Perez G, Kjaer SK, et al (2007). Quadrivalent vaccine against human papillomaviruses to
prevent high-grade cervical lesions. New Engl J Med, 356:191527.
55 Schiller JT, Castellsagu X, Villa LL, & Hildesheim A (2008). An update of prophylactic human
papillomavirus L1 virus-like particle vaccine clinical trial results. Vaccine, 26(S10):K53K61.
56 Rambout L, Hopkins L, Hutton B, & Fergusson D (2007). Prophylactic vaccination against human
papillomavirus infection and disease in women: a systematic review of randomized controlled trials.
CMAJ, 177(5):469479.
57 Koutsky LA & Harper DM (2006). Chapter 13. Current findings from prophylactic HPV vaccine trials.
Vaccine, 24(S3):S114S121.
58 Villa LL, Perez G, Kjaer SK, et al (2007). Prophylactic efficacy of a quadrivalent human papillomavirus
(HPV) vaccine in women with virological evidence of HPV infection. J Infect Dis, 196:143846.
59 Nishida KJ, Pearson JM, & Twiggs LB (2008). Cross-protection from human papillomavirus 16/18
against types 45 and 31: fact or fancy? Therapy, 5(3):26568.
60 Wright TC, Bosch FX, Franco EL, et al (2006). Chapter 30. HPV vaccines and screening in the
prevention of cervical cancer; conclusions from a 2006 workshop of international experts. Vaccine,
24(S3):S251S261.
61 Herzog TJ, Huh WK, Downs LS, et al (2008). Initial lessons learned in HPV vaccination. Gynecologic
Oncol, 109:S4S11.
62 Andrus JK, Lewis MJ, Goldie SJ, et al (2008). Human papillomavirus vaccine policy and delivery in
Latin America and the Carribean. Vaccine, 26(S11):L80L87.
63 Kirby DB, Laris BA, & Rolleri LA (2007). Sex and HIV education programmes: their impact on sexual
behaviors of young people throughout the world. J Adolesc Health, 40(3):20617.
64 Bosch FX, Burchell AN, Schiffman M, et al (2008). Epidemiology and natural history of human
papillomavirus infections and type-specific implications in cervical neoplasia. Vaccine,
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65 Garnett GP, Kim JJ, French K, & Goldie SJ (2006). Chapter 21. Modelling the impact of HPV vaccines
on cervical cancer and screening programmes. Vaccine, 24(S3):S178S186.
66 Kulasingam S, et al (2007). A cost-effectiveness analysis of adding a human papillomavirus vaccine to
the Australian National Cervical Cancer Screening Programme. Sex Health, 4(3):16575.
67 Brisson M, N Van de Velde, P De Wals (2007). The potential cost effectiveness of prophylactic human
papillomavirus vaccines in Canada. Vaccine, 25:5399408.
68 Elbasha EH, Dasbach EJ, Insinga RP (2007). Model for assessing human papillomavirus vaccination
strategies. Emerg Infect Dis, 13:2841.
69 Taira AV, Neukermans CP, Sanders GD (2004). Evaluating human papillomavirus vaccination
programmes. Emerg Infect Dis, 10:191523.
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70 Goldie SJ, Kohli M, Grima D (2004). Projected clinical benefits and cost-effectiveness of a human
papillomavirus 16/18 vaccine. J Natl Cancer Inst, 96:60415.
71 Sanders GD & Taira AV (2003). Cost-effectiveness of a potential vaccine for human papillomavirus.
Emerg Infect Dis, 9:3748.
72 Nanda K, McCrory DC, Myers ER, et al (2000). Accuracy of the Papanicolaou test in screening for and
follow-up of cervical cytologic abnormalities: a systematic review. Ann Intern Med, 132:81019.
73 Davey E, Barratt A, Irwig L, et al (2006). Effect of study design and quality on unsatisfactory rates,
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74 Hildesheim A, Herrero R, Wacholder S, et al (2007). Effect of human papillomavirus 16/18 L1 viruslike
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75 Clifford GM, Rana RK, Franceschi S, Smith JS, Gough G, & Pimenta JM (2005). Human papillomavirus
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76 Ault KA & Future II Study Group (2007). Effect of prophylactic human papillomavirus L1 viruslike-particle vaccine on risk of cervical intraepithelial neoplasia grade 2, grade 3, and adenocarcinoma
in situ: a combined analysis of four randomized clinical trials. Lancet, 369(9576):186168.
77 Franco EL, Cuzick J, Hildesheim A, & de Sanjose S (2006). Chapter 20. Issues in planning cervical
cancer screening in the era of HPV vaccination. Vaccine, 24(S3):S171S177.
78 Franco EL & Cuzick J (2008). Cervical cancer screening following prophylactic human papillomavirus
vaccination. Vaccine, 26(S1):A16A23.
79 Franco E, Tsu V, Herrero R, et al (2008). Integration of human papillomavirus vaccination and cervical
cancer screening in Latin America and the Carribean. Vaccine, 26(S11):L88L95.
80 Franco EL (2003). Primary screening of cervical cancer with human papillomavirus tests. J Natl Cancer
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81 International Agency for Research on Cancer (IARC) Working Group (1995). Cervix cancer screening.
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82 Arbyn M, Sasieni P, Meijer CJ, Clavel C, Koliopoulos G, & Dillner J (2006). Chapter 9. Clinical
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83 Cuzick J, Mayrand MH, Ronco G, Snijders P, & Wardle J (2006). Chapter 10. New dimensions in
cervical cancer screening. Vaccine, 24(S3):S90S97.
84 Kotaniemi-Talonen L, Nieminen P, Anttila A, & Hakama M (2005). Routine cervical screening
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93(8):86267.
85 Ronco G, Segnan N, Giorgi-Rossi P, et al (2006). New Technologies for Cervical Cancer Working
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the new technologies for cervical cancer randomized controlled trial. J Natl Cancer Inst,
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86 Parkin DM, Whelan S, Ferlay J, Raymond LE, & Young J (1997). Cancer incidence in five continents.
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87 Muoz N, Castellsagu X, Berrington A, & Gissmann L (2006). Chapter 1. HPV in the etiology of
human cancer. Vaccine, 24(S3):S1S10.
88 Daling JR, Madeleine MM, Schwartz SM, et al (2002). A population-based study of squamous cell
vaginal cancer: HPV and cofactors. Gynecol Oncol, 84(2):26370.
89 Judson PL, Habermann EB, Baxter NN, Durham SB, & Virnig BA (2006). Trends in the incidence of
invasive and in situ vulvar carcinoma. Obstet Gynecol, 107(5):101822.
90 Hampl M, Sarajuuri H, Wentzensen N, Bender HG, & Kueppers V (2006). Effect of human
papillomavirus vaccines on vulvar, vaginal, and anal intraepithelial lesions and vulvar cancer. Obstet
Gynecol, 108(6):136168.
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Part 4
Optimizing patient care
Chapter 7
Improving cancer services: the approach

taken in England
Mike Richards1
The overall goals of a national cancer control programme should be to reduce the burden
of cancer in the population to a minimum and to provide optimal care to individual patients.
To achieve these goals actions are required:
To reduce the incidence of cancer (prevention)
To improve survival rates through screening, early diagnosis and optimal delivery of treatments
To reduce mortality through actions on incidence and survival
To improve the quality of care, and thereby the quality of life, for those affected by cancer
To optimize end of life care for those dying of cancer
To build for the future through research
This chapter focuses on the approach taken to cancer control in one country. England was
amongst the first jurisdictions to attempt to develop and implement a comprehensive national
cancer programme. Many of the individual actions described here are similar to those being taken
in other parts of the United Kingdom and in other countries including Denmark, France, and
Canada. However, although the actions required are often similar, the delivery mechanisms may
well need to be different, depending on the organization of health services within a particular
jurisdiction. Indeed, even within one country the approach taken to implementation of a cancer
strategy may need to change over time. This has been the case in England, where approaches to
implementation have needed to respond to the evolution of the National Health Service (NHS).
Although the focus of this chapter is on one country, many of the issues addressed are likely to be
relevant elsewhere. These include:
Why was a cancer control programme needed?
What strategies have been adopted over the past 15 years and why?
What has facilitated or impeded progress?
What are the challenges for the future?
Background
The UK National Health Service
The NHS was established in the United Kingdom in 1948 with the aim of delivering a comprehensive service which was free at the point of delivery based on clinical need, not on ability to pay.
Professor Mike Richards, CBE, MD, FRCP, National Cancer Director, England.
132
IMPROVING CANCER SERVICES: THE APPROACH TAKEN IN ENGLAND
Since its inception it has been very largely tax funded, though limited charges have been payable
for many years by some patients for prescriptions, dentistry, and some other services. Public
expenditure accounts for almost 90 per cent of total expenditure on health in England.
Since the late 1990s responsibility for healthcare in Scotland, Wales, and Northern Ireland has
progressively been devolved to relevant administrations, while that for England (population
around 50 million) remains the responsibility of the UK government through the Department of
Health in London.
Expenditure on healthcare in England lagged behind the European average in the 1980s
and 1990s, though the gap has narrowed considerably in recent years. As a consequence, the
infrastructure of the NHS in terms of workforce and facilities lagged behind that of other
countries in the 1990s. This applied to the infrastructure for cancer services (e.g. CT scanners,
MRI scanners, and linear accelerators) and to other aspects of healthcare. In the late 1990s
Germany had twice as many doctors per head of population (3.6 per 1000) as the United
Kingdom (1.8 per 1000).
The NHS has remained much loved by the population throughout its 60 years existence. Pride
in the NHS was undoubtedly justified in its early years, but may have led to a degree of blindness
to its deficiencies especially in the 1980s and early 1990s.
Cancer in England in the early 1990s

Like other western countries, the United Kingdom has a high death rate from cancer, with
approximately one in three of the population developing cancer and one in four dying from
cancer. Overall cancer mortality rates in England are broadly similar to those in comparator
countries, though in the late 1980s and early 1990s mortality rates for lung cancer in men and
breast cancer in women were amongst the worst in the world.
During the 1990s it became progressively more apparent that survival rates across a range
of cancer types were inferior to those in most other Western European countries. The evidence
for this came from the series of EUROCARE studies, which started with patients diagnosed
in 1978 to 1985 and has most recently assessed outcomes for patients diagnosed in 2000 to
2002 [15]; see Figures 7.1 and 7.2. Initially the validity of these comparisons was questioned by
clinicians in the United Kingdom and the results were greeted with disbelief by some. However,
over time it has become generally accepted that the poor survival rates in the United Kingdom
observed in the 1980s and 1990s were real and reflected a failure of the healthcare system to
deliver optimal care.
What were these failures? In retrospect it is clear that the NHS was failing cancer patients in
multiple ways: capacity was inadequate, new technology was only being adopted very slowly, few
attempts had been made to streamline care delivery, few patients benefited from care being delivered by a coordinated team of professionals, many patients were being treated by generalists
rather than specialists and there was poor communication between primary, secondary, and tertiary services. Taking breast cancer in the early 1990s as an example, it was possible for even a
young woman not to undergo axillary node staging and for no attempt to be made to record the
tumour size or pathological grade.
It is hard to understand why such a state of affairs had been allowed to exist. A fatalistic or
nihilistic attitude towards cancer amongst both health professionals and the public, combined
with a belief (pre EUROCARE) that outcomes in the United Kingdom would match those elsewhere may have been underlying factors. Importantly comparative data were unavailable and
advocacy by patient groups and charities was, at that time, very weak.
FIRST STEPS TO IMPROVE CANCER SERVICES (199599)
20
40
60
80
AUSTRIA
FRANCE
GERMANY
SPAIN
SWITZERLAND
NETHERLANDS
SWEDEN
FINLAND
ITALY
NORWAY
ENGLAND
SCOTLAND
WALES
DENMARK
CZECH REP.
SLOVENIA
ESTONIA
SLOVAKIA
POLAND
EUROPE
100
MEN
20
40
60
FRANCE
AUSTRIA
SWEDEN
SPAIN
SWITZERLAND
FINLAND
NETHERLANDS
GERMANY
ITALY
NORWAY
DENMARK
ENGLAND
SCOTLAND
WALES
SLOVENIA
CZECH REP.
SLOVAKIA
ESTONIA
POLAND
EUROPE
80
100
WOMEN
Nordic countries
South and West Europe
UK (presented for England, Scotland, Wales)
Eastern Europe
Date covering less than 100% of countries (see text)
Iceland, Malta, and Portgual not included
Fig. 7.1 5-year relative survival for all cancers combined, age standardized and incidence weighted,
Europe, adults diagnosed in 1990 to 1994 and followed up to 1999.
Source: From Eurocare 3 data. [3]
First steps to improve cancer services (199599)

The Calman-Hine report (1995)
The first wake up call on cancer services in England and Wales came in the mid-1990s. The
Chief Medical Officers for England and Wales, Dr Kenneth Calman and Dr Deirdre Hine,
commissioned a report by an expert advisory group on cancer which is now commonly called
100
60
80
60
40
40
20
20
0
0
199193 199496 199799 200002
Colorectal
Northern Europe
Southern Europe
199193 199496 199799 200002

Breast
UK and Iralend
Eastern Europe
Central Europe
Fig. 7.2 5-year-period survival rates 1991 to 2002 for colorectal and breast cancer.
From Eurocare 4 data [5].
133
134
the Calman-Hine report [6]. It is noteworthy that both chief medical officers had a pre-existing
interest in cancer. The expert advisory group considered the evidence that was emerging at that
time showing better outcomes for patients treated by specialists or in specialist centres for rare,
uncommon, and common cancers. Alongside this a consensus was developing, at least amongst
experts in breast cancer, that specialist breast units represented the optimal way forward [7].
The Calman-Hine report set out important principles regarding the provision of cancer care.
Three levels of care working together as a network were recommended: primary care, cancer units
in district general hospitals, and cancer centres which would normally service populations of at
least one million. Multidisciplinary consultation and management was seen as essential.
The Calman-Hine report provided a much needed vision for the delivery of high quality care
for all cancer patients. However, it did not cover prevention, screening or waiting times for
hospital services. In addition it was not accompanied by any commitments on funding. It cannot
therefore be considered as a comprehensive cancer control plan. Furthermore, implementation
was not centrally directed.
Following publication of the Calman-Hine report progress was undoubtedly made, but the
pace of change was variable. Different regions within England took different approaches. Some
focused on the designation of cancer centres and cancer units, while others concentrated more on
developing whole networks of care. Some pioneered approaches to accreditation of services.
Improving outcomes guidance

At a national level further work was commissioned to develop a series of guidance documents on
services for different cancer sites (see Table 7.1). These Improving Outcomes Guidance Reports
were developed over a period of a decade (19962006). For each report proposals from a broad
group of experts (including patients) were subjected to formal systematic reviews of the research
Table 7.1 Improving outcomes guidance reports

Breast cancers
1996 and 2002 (update)
Colorectal cancers
1997 and 2004 (update)
Lung cancers
1998
Gynaecological cancers
1999
Upper gastrointestinal cancers
2001
Urological cancers
2002
Haematological cancers
2003
Head and Neck cancers
2004
Supportive and palliative care
2004
Childrens and Young Peoples cancers
2005
Skin cancers
2006
Brain tumours
2006
Sarcomas
2006
These reports were published by the Department of Health until 2001 and by the National Institute of Health and Clinical
Excellence (NICE) from 2002 onwards
FIRST STEPS TO IMPROVE CANCER SERVICES (199599)
evidence and to wide consultation. The aim of each report is to set out the characteristics of
a service which will deliver optimal outcomes. The reports are not designed as clinical guidelines
which may inform decision making for individual patients. Instead they are aimed at the organizational level giving advice on the composition of multidisciplinary teams and on the relationship
between volume or throughput of cases and outcomes. For several cancer types (e.g. gynaecologic, urological, upper gastrointestinal and head and neck cancers), the relevant Improving
Outcomes Guidance report recommended that complex surgery should be consolidated in fewer
hospitals than previously.
Steps taken by the new Labour Government (1997 onwards)

One of the first actions of the incoming Labour Government in 1997 was to raise the profile of
waiting times for cancer, building on an election manifesto commitment. It is interesting to note
that politicians had picked up on long-standing concerns amongst patients and the public about
delays in diagnosis and treatment, even though this had not been addressed in the Calman-Hine
report developed largely by healthcare professionals.
The initial commitment on waiting times was that everyone with suspected cancer will be
able to see a specialist within two weeks of their GP deciding they need to be seen urgently and
requesting an appointment. We will guarantee these arrangements for everyone with suspected
breast cancer by April 1999 and for all other cases of suspected cancer by 2000 [8]. This commitment related solely to the interval between referral by a general practitioner (GP) and the first
hospital visit. At this stage no commitments were made regarding the intervals to diagnosis or
treatment.
In support of this commitment the Department of Health commissioned a retrospective
baseline audit of waiting times for all patients diagnosed with cancer in England in the month
of October 1997 [9]. This confirmed the size of the problem, with less than two thirds of patients
who had been referred urgently being seen at a hospital within two weeks. To support implementation of the two week wait target prospective monitoring arrangements were established and
referral guidelines for suspected cancer were published by the Department of Health [10].
The late 1990s also saw the first injection of dedicated funds to improve the quality of cancer
care. Implementation of each of the first three Improving Outcomes Guidance reports was
undoubtedly assisted by the allocation of 10m of recurrent funding to support the development
of teams and services for the relevant cancer. Progress towards the two week waiting time standard was also backed by the allocation of funds, which were used in some parts of the country to
establish rapid access clinics (e.g. for patients with haematuria or postmenopausal bleeding).
Another important development at this time was the rise of advocacy related to cancer care.
The National Cancer Alliance, which brought together patients and health professionals, undertook research based on focus groups of patients in different parts of the country, resulting in
a report entitled Patient Centred Cancer Services: what patients say published in 1996 [11]. This
highlighted the importance of information and support, good communication between patients
and professionals, and continuity of care amongst other issues. This type of market research had
not previously been applied to cancer care in the UK.
At around the same time another cancer charity undertook a survey of health professionals
working in different parts of the country to assess progress on implementation of the CalmanHine report [12]. There is no doubt that advocacy by cancer charities has been an important
catalyst for progress over the subsequent decade.
Despite all of these activities, a broad consensus emerged in early 1999 that the pace of change
on cancer was not fast enough. Further evidence was emerging from the EUROCARE programme
[2] on poor survival rates in the United Kingdom, along with strong evidence of differences in
135
136
survival rates within England and Wales between NHS Regions and by socio-economic status
[13]. In response to this the then Prime Minister, Tony Blair, convened a summit meeting on
cancer at 10 Downing Street in May 1999. The fact that England and Wales generally lagged
behind Europe on cancer survival rates was openly acknowledged by the government [14] and
cancer was declared to be a top priority.
A number of actions followed the Downing Street summit. These included:
A review of cancer research
Establishment of a Cancer Action Team to promote implementation of cancer policy
A review of cancer services by the Commission for Health Improvement [15]
A large scale survey of the perceptions of cancer patients regarding their experience of
care [16]
Establishment of a Cancer Services Collaborative to support modernization of services at

a local level
Establishment of the post of National Cancer Director
The role of the National Cancer Director has been to lead the development of almost all aspects
of cancer policy and to oversee implementation across the NHS. The only exception to this relates
to the prevention of cancer, where there is clearly a great deal of overlap with other conditions
such as cardiovascular disease. The National Cancer Director does, however, input to policy on
prevention, particularly in relation to smoking and skin cancer.
On smoking the government set a target in 1998 to reduce smoking among adults from 28 per
cent to 24 per cent by 2010 [17]. To achieve this, measures were introduced to increase taxation
on tobacco, to end advertising and promotion of cigarettes, to reduce smuggling of tobacco
and to assist smokers to quit. Much later (2007) legislation was introduced to make workplaces
and public places smoke free. Adult smoking prevalence has now fallen to 21 per cent, with
further reductions anticipated as a result of the smoke-free legislation.
A wider public health agenda was set out in 1999 in Saving Lives our Healthier Nation [18].
Included within this was a target to reduce the death rate from cancer in people under 75 years
by at least a fifth by 2010, saving up to 100,000 lives in total. Mortality was already falling by the
time the target was set. However, achievement of the target would require the existing trends to
be continued over a period of 14 years.
The NHS Cancer Plan 2000

Development of the plan
One of the early tasks for the National Cancer Director was to secure agreement from the government for the development of a national cancer plan. This was agreed early in 2000 and it was
made clear that the plan should be published as soon as reasonably possible.
The NHS Cancer Plan [19] was developed in parallel with the wider NHS Plan [20]. Both of
these plans were developed in the context of a decision taken in March 2000 to make a sustained
increase in NHS spending amounting to a real terms increase of a third over five years. Over time
the aim was to bring health spending in England up to the EU average. Both plans carried the
subtitle A plan for investment, a plan for reform. Importantly both were launched by the then
Prime Minister.
Given the timescale of less than 6 months from decision to develop a cancer plan to publication, it was not possible to establish a major formal consultative process. Instead, the National
Cancer Director set up a small informal advisory group of experts and complemented this with
extensive informal consultation at many different meetings and conferences. It might be argued
THE NHS CANCER PLAN 2000
that the product would have been better given more time and more formal consultation. However,
in many ways, the actions required at that time were fairly clear cut, including the need to expand
capacity in cancer services. It would certainly have been a mistake to delay and thereby risk any
loss of political support.
Content and commitments

The NHS Cancer Plan [19] had ambitious aims, to raise the level of cancer services in England to
be among the best in Europe and to save lives. It was the first comprehensive national cancer
programme in England covering prevention, screening, community cancer services, cutting waiting times, improving treatment, and improving care including palliative care. The plan set out a
number of key targets and commitments including new waiting time targets for diagnosis and
treatment, extending cancer screening, and introducing nationwide peer assessment processes for
cancer services to monitor implementation of the Improving Outcomes Guidance.
The Cancer Plan was backed with substantial extra funding and commitments to invest in staff,
facilities, and research. The plan heralded the establishment of a National Cancer Research
Institute (see next section). The plan made clear that cancer networks would be a major vehicle
for local delivery of the commitments with oversight from the Regional Offices of the NHS. In
addition a new Cancer Taskforce was established chaired by the National Cancer Director to
oversee progress at a national level. Clear steps towards implementation were set out as part of the
Cancer Plan with associated milestones for the early years.
Progress 2000 to 2005

Ideally progress would be measured in terms of clinical outcomes (survival, mortality, and
patients own reports of their experience of care and their health and wellbeing). However, some
clinical outcomes are only measurable years after the event to which they relate (e.g. diagnosis
and primary treatment). In addition if clinical outcomes improve it is not always clear what
the change is attributable to (e.g. a change in service organization or the introduction of a new
treatment).
It is therefore highly desirable to measure the structures and processes of care as well as the
outcomes. For many of the potential measures of structure and process there is a strong evidential
link with better outcomes. Examples of measures which have been used to monitor progress in
implementation of the NHS Cancer Plan are shown in Tables 7.2 and 7.3.
Progress following publication of the NHS Cancer Plan has been monitored at a national level
by the following bodies:
A Cancer Programme Board at the Department of Health, chaired by the National Cancer
Director. The Board meets monthly to review progress on all aspects of cancer policy.
A Cancer Taskforce, with external representatives, met twice a year in the initial years after
publication of the Cancer Plan. It has recently been replaced by an advisory board to monitor
progress following the Cancer Reform Strategy.
The National Audit Office, which scrutinizes public spending on behalf of parliament, undertook three detailed reviews into cancer in 2004 and 2005 [2123].
The Care Quality Commission (the successor body to the Commission for Health Improvement
and the Healthcare Commission) monitors compliance against key targets by individual
NHS organizations.
Advisory groups established by the Department of Health and chaired or co-chaired by the
National Cancer Director (e.g. for prostate, bowel, and lung cancer and for radiotherapy and
chemotherapy) monitor progress on individual areas within the programme.
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Table 7.2 Measuring structures and processes of cancer services

Smoking
Attenders at stop smoking services

Numbers of quitters (e.g. at 4 weeks)
Smoking prevalence in the population
Screening
Uptake/coverage rates
Numbers and rates of cancers detected
Size/stage of cancers detected
Various quality assurance measures
Waiting times
Interval from urgent referral to first hospital visit

Interval from urgent referral to first treatment
Interval from diagnosis (decision to treat) to treatment
Multidisciplinary teams
Number of teams and throughput of cases

Compliance with national peer review standards/measures
Treatment
Numbers of procedures (e.g. prostatectomies)

Fractions/courses of radiotherapy
Uptake of new drugs
Workforce
Numbers of consultants
Numbers of nurse specialists
Numbers of radiographers
Participants in national training programmes
Facilities
Numbers of CT scanners
Numbers of MRI scanners
Numbers of PET/CT scanners
Numbers of linear accelerators
Investment
Total investment in cancer services (nationally or locally)

Additional investment in cancer services (year on year)
Expenditure on specialist palliative care
Table 7.3 Outcome measures for cancer

Incidence
Incidence rates by tumour type
Survival
1-year survival rates by tumour type

5-year survival rates by tumour type
Mortality
30 day mortality (e.g. following surgery)

Overall mortality
Mortality in socio-economically deprived areas
Patient Experience
Surveys of patients reports of their experience of care
This level of scrutiny has been critical to maintaining momentum. The reports from the
National Audit Office have shown that good progress has been made on virtually every aspect of
the Cancer Plan, but that there is still more to be done to deliver optimal outcomes [2123].
National drivers for change

The existence of a cancer plan sets a direction of travel, but does not in itself drive change. What
are the drivers for change in a system as large and complex as the NHS? The National Cancer
Director does not personally control local expenditure on cancer in England (currently estimated
to be around 4.9 billion per annum), nor does he have direct authority over local commissioners
or providers of services. He does, however, have influence vested in him by Ministers. This influence can be exercised directly through cancer networks and other organizations and through the
performance management structure of the NHS. The latter includes the Department of Health,
Strategic Health Authorities, and Primary Care Trusts.
The influence of the National Cancer Director is greatly enhanced by the existence of several
relatively small but highly effective teams with different functions, but which work together as
a National Cancer Programme, led by the National Cancer Director. These individual teams have
evolved over time, but currently comprise:
The Department of Health Cancer Policy Team (led by Ms Jane Allberry) which provides
advice to Ministers on all aspects of cancer and supports the National Cancer Director in
developing and monitoring cancer policy
The National Cancer Screening Team (led by Prof Julietta Patnick) which oversees the
introduction of new screening programmes, the extension of existing programmes, quality
assurance of screening, and coordination of the national screening programmes
The National Cancer Action Team (led by Ms Teresa Moss) which has key roles in supporting the development of cancer networks, the development of standards/measures for cancer
services, overseeing peer review appraisal of cancer services, and stronger commissioning
amongst other functions
NHS Improvement Cancer (formerly the Cancer Services Collaborative) (led by Dr Janet
Williamson) which works with individual multidisciplinary teams and cancer services to
streamline and modernize care for the benefit of patients and the NHS. NHS Improvement
has had an important role in helping local cancer services to deliver reductions in waiting
times. It is now focussing on transforming inpatient care and on the survivorship agenda
The National Cancer Intelligence Network (led by Mr Chris Carrigan) which was launched
in 2008 and brings together the eight regional cancer registries in England, clinical reference
groups for each tumour group, and a national cancer services analysis team
Support and encouragement from national teams are, however, not always sufficient on their
own to deliver improvements in cancer services. The natural inertia in any large system should not
be underestimated. Such inertia has certainly been observable in some NHS cancer services over the
past decade. Hardworking clinicians often believe that improvements can only be brought about
through substantial investment in additional staff, though the Cancer Services Collaborative has
clearly demonstrated that major improvements can frequently be made with minimal investment
by rationalising pathways of care. In addition, health service managers may not have sufficient
insight into clinical processes or expertise in service improvement to help bring about change.
To overcome the barriers to change several complementary approaches were used following the
publication of the NHS Cancer Plan. The key drivers were:
Targets and rigorous performance management
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Guidance, standards, and peer review
Support for service improvement
Funding for national training initiatives
In addition financial incentives have been used to a very limited extent to enhance cancer
services delivery in primary care through the Quality and Outcomes Framework (QOF). This is
a voluntary annual reward and incentive programme for all GP practices. This has, for example,
encouraged GPs to maintain registers of patients with cancer and to establish better care processes
for people approaching the end of life.
Targets and rigorous performance management

Both the NHS Plan and the NHS Cancer Plan relied heavily on the combination of additional
investment by local health services and targets as a driver for change. The targets made clear the
areas in which investment and reform were most needed. In relation to cancer the key areas
covered by targets were:
Reductions in smoking rates in socio-economically deprived groups
Extension of the breast screening programme
Upgrading of the cervical screening programme
Establishment of a colorectal cancer screening programme if and when pilot studies demonstrated that this was appropriate
Reducing waiting times between referral and first treatment
Reducing waiting times between diagnosis and first treatment
Implementation of the Improving Outcomes Guidance recommendations
Investment in hospices and specialist palliative care services
Increased overall investment in cancer services
These areas were therefore regarded as must dos for the NHS. This was reinforced through
subsequent guidance documents from the Department of Health to the NHS regarding priorities
for each year. The many other commitments in the Cancer Plan were seen as desirable but somewhat less essential.
Despite their must do status achievement of the various targets required a considerable push
from the centre. In the case of the extension of the breast screening programme, for example,
most parts of the country achieved the target within the prescribed timescale. In the remaining
areas strong pressure from the performance management team at the Department of Health was
required.
In relation to the additional 50m promised for hospices and specialist palliative care services,
it became clear that appropriate levels of additional funding were not being made by local Primary
Care Trusts from their baseline allocations. As this was a high profile area involving a Cancer Plan
target and the voluntary sector, a decision was made to establish a central fund of 50m for three
years. This was then provided to localities on receipt of acceptable plans for service improvement.
Spending on this area was rigorously monitored.
After the first full year of implementation of the Cancer Plan it also became apparent that
progress towards the overall target to increase expenditure on cancer by 570m a year by 2003
2004 was unsatisfactory. However, it was not felt to be appropriate to establish a central fund for
all new investment in cancer. Instead a rigorous investment tracking exercise was instituted. In
the end investment was shown to be ahead of target (639m) over the relevant time period [27].
More recently, programme budgeting has been introduced within the NHS, making tracking of
investment much simpler. This provides a retrospective analysis of NHS resource utilization
across 23 service areas, based on returns from Primary Care Trusts. Programme budgeting data
has shown a further increase in expenditure of 27 per cent in the three year period 2003/04
to 2006/07.
The actions that were required to achieve the waiting time targets have been reported separately
[28] and are summarized later in this chapter.
Guidance, standards, and peer review

Until the late 1990s no serious attempt had been made to assess the quality of local cancer services
in England. Following the Calman-Hine report and the publication of the early Improving
Outcomes Guidance reports, several NHS Regions (most notably Trent, Northern and Yorkshire)
had started to develop their own approaches to appraisal or accreditation of services. By 2000
it was apparent that a national approach would be more desirable and that national standards
(later referred to as measures) were needed, so that services could be assessed against common
criteria.
A first national round of peer review was undertaken in 2001. This focused on four tumour
groups (breast, colorectal, lung, and gynaecological) and involved nearly 700 multidisciplinary
teams. Cross cutting services such as pathology, chemotherapy, radiotherapy, and specialist
palliative care were also appraised [24]. Much of the learning from this initiative came from
clinicians visiting services other than their own and gathering ideas on how their services might
be improved.
The measures were revised and extended in 2004 [25] when a second round of peer review visits
commenced. This involved a total of 1069 multidisciplinary teams (MDTs) across six tumour
types (upper gastrointestinal and urological cancer services now being included), 1051 cross
cutting services, and 8 cancer registries. The findings were all openly reported to individual
NHS organizations and to local cancer networks and commissioners and published on a website
(www.cquins.nhs.uk).
This second round of peer review confirmed that MDT working is now firmly embedded in this
country and that considerable progress had been made since 2001 [26]. It showed that some
teams were achieving very high levels of compliance with the measures of structure and processes
of care. However, significant challenges were also highlighted. These included shortages of
key staff groups such as clinical nurse specialists, histopathologists, and specialist palliative care
staff in some teams. The publication of a national overview [26] has allowed individual cancer
networks to benchmark the performance of their own services against those elsewhere in the
country. Those with poorly performing services have been asked to confirm that remedial action
has been taken.
There is a broad consensus that the peer review programme has been a valuable driver for
service change. The programme will continue, but over time there will be a greater emphasis on
measures of outcome and on self assessment, to reduce the burden of visits. There is no doubt
that the combination of Improving Outcomes Guidance and peer review appraisal has pushed
forward the consolidation of complex cancer surgical services.
Support for service improvement

The Cancer Services Collaborative was established in 1999, based on approaches developed by
Don Berwick at the Institute for Healthcare Improvement in Boston, Massachusetts. More
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recently the collaborative has merged into NHS Improvement, which is undertaking similar
initiatives in cardiac and stroke services.
In essence the approach involves gaining a detailed understanding of current care processes
and then testing modifications. Often no single person will understand all the elements of a care
process. For example, a consultant may have little knowledge of how referrals reach his office via
a hospital post room or how bookings are made. Similarly, managers may have little understanding of the rationale for a sequence of diagnostic and staging investigations.
In relation to cancer services in England this approach has been demonstrated to reduce waiting times for radiological investigations and endoscopy and to facilitate achievement of both
the two week waiting time target and the Cancer Plan targets for reducing waiting for diagnosis
and treatment. More recently a similar approach has been shown to be effective in streamlining
inpatient care pathways. The same principles are also being used to reduce the turnaround time
between a woman having a cervical screening test and receiving the result.
The approach works well with enthusiasts and so-called early adopters. Engaging other clinicians and managers remains a challenge. To a certain extent the combination of a service improvement approach showing what can be achieved and a performance management approach showing
what must be achieved can be very powerful (see cancer waiting times in the following sections).
Funding for national training initiatives

The United Kingdom has a strong record of invention, but the NHS lags behind in the systemic
uptake of innovations [29]. This is true for cancer and for other areas of healthcare. One of the clearest examples of this was the introduction of a new surgical procedure, total mesorectal excision
(TME) for rectal cancer. This had been pioneered by a surgeon, Prof Heald, in Basingstoke, England
in the 1980s. He had then trained surgeons in many other countries, but without significant uptake
in the United Kingdom, despite evidence of lower recurrence rates and improved survival using the
TME technique. Eventually, as a result of funding from the NHS Cancer Plan and a successful pilot
programme funded by Macmillan Cancer Support, it became possible to institute a national training programme in England. This involved almost every colorectal cancer team in the country.
Importantly the training was multidisciplinary involving radiologists, pathologists, oncologists, and
nurse specialists as well as colorectal surgeons. In addition to the benefits for patients it is highly
likely that the programme will be cost-saving over a small number of years, with fewer patients
needing permanent colostomies and fewer needing treatment for recurrence.
Building on the success of the TME training programme comparable initiatives have now been
undertaken or are underway relating to:
Sentinel lymph node biopsy for breast cancer
Colonoscopy where major improvements in complete examinations have been observed
Laparoscopic colorectal surgery
One of the key skills required by cancer clinicians is that they should be able to communicate
effectively with their patients and with their colleagues. Prior to the publication of the NHS
Cancer Plan a large survey of hospital consultants involved in cancer care had shown that less
than half felt that they had had adequate training in communication. One of the commitments in
the Cancer Plan was to provide such training. Based on models of training which have been
proven to be effective in randomized controlled trials a training programme is now being rolled
out across the NHS.
Local implementation through cancer networks

Cancer networks started to develop in the late 1990s in response to the Calman-Hine report. The
NHS Cancer Plan subsequently made it clear that cancer networks would be the organizational
model for implementation. Cancer networks bring together health service commissioners
(Primary Care Trusts) and providers (primary and community care and hospitals, the voluntary
sector and (ideally) local authorities). They are partnership organizations with no statutory
authority but with a core team of dedicated staff. Their authority and influence comes from that
vested in them by the relevant partner organizations (e.g. Primary Care Trusts in relation to
commissioning). The funding for most aspects of cancer care is held by Primary Care Trusts serving populations typically of 300,000 to 500,000, though that for some complex services is held by
specialized commissioning groups which cover the territories of a Strategic Health Authority
(typically serving a population of around 5 million).
The key tasks of a cancer network are:
To support PCTs in their role as commissioners of cancer services
To assess the needs of the local population
To develop and monitor local plans which are in line with national policy
To support service reconfiguration in line with Improving Outcomes Guidance where

necessary
To support achievement of key targets and commitments
To facilitate effective coordination of care across organizational boundaries
There are currently 28 cancer networks in England. Typically they serve populations of 1 to
2.5 million, though a few serve large populations (up to 3.2 million). In essence the boundaries
of a network should reflect the natural flows of patients from the community to district
Network Board
(Usually chaired by a PCT Chief Executive)
Network Core team

(Director, Medical Director, Nursing Director, Service Improvement Lead,
Pharmacist, Allied Health Professional Lead, Patient Information Lead,
Administrative Staff +/ others)
Commissioning Group
Tumour Groups
E.g. Breast, colorectal,
lung, urological cancer
Patient/User Involvement Group

+ Locality groups covering smaller areas
Fig. 7.3 Structure of a typical cancer network.
Cross-cutting Groups
E.g. radiotherapy,
chemotherapy, palliative
care
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general hospitals and on to tertiary services. The structure of a typical cancer network is shown in
Figure 7.3.
The study undertaken by the National Audit Office approximately four years after publication
of the NHS Cancer Plan showed that cancer networks had helped to drive forward improvements
in cancer services, but that there was more to do if they were all to become fully effective [23]. In
part this was because of wider organizational changes in the NHS involving both Strategic Health
Authorities and Primary Care Trusts. Further progress has undoubtedly been made over the subsequent four years, although some networks appear to be more effective than others. However,
without networks it is extremely unlikely that some of the reconfiguration which has taken place
would have been achieved.
The National Cancer Action Team (NCAT) has an important role in supporting cancer
network development. NCAT organizes and sponsors three two-day meetings each year of around
10 representatives from each of the 30 networks. These Network Development Programme
meetings provide a very useful opportunity for information and ideas to be shared between the
centre and the networks and between networks themselves. The success of this initiative can
partly be assessed by the keenness of participants to attend.
Problems and solutions

As has already been indicated, implementation of the Cancer Plan has not always been straightforward, even when a commitment was backed by a clear target. However, when problems have
arisen, solutions have been found or progress towards a solution is underway.
Examples include:
Achievement of the Cancer Plan waiting time targets
Provision of world class radiotherapy services
Provision of access to cost-effective new medicines
Achieving the waiting time targets

The waiting time targets set in the NHS Cancer Plan built on the two week wait target which had
been set in the late 1990s. The two most important targets were:
1 A maximum of one month (31 days) wait from diagnosis to first treatment of all cancers.
Diagnosis was subsequently deemed to be the date of decision to treat.
2 A maximum two month (62 days) wait from urgent GP referral to first definitive treatment
for all cancers.
Both of these targets had to be achieved by December 2005. By international standards
these targets may be considered to be undemanding, though few countries can provide data on
these time intervals. Nonetheless, the targets were considered demanding in England and proved
to be so.
Although a great deal of work was done between 2000 and 2004 to expand the cancer workforce, to demonstrate through the Cancer Service Collaborative that reductions in waiting times
could be achieved and to put monitoring systems in place, in practice progress remained very
disappointing. At the end of 2004 less than 80 per cent of patients were being treated within the
62 day period, with virtually no improvement over the previous 12 months.
Recognising this and in response to media pressure and political concern, a National Cancer
Waits Project (NCWP) was established at the end of 2004 bringing together the Cancer Policy
Team and the Performance Management Team at the Department of Health, the Cancer Services
Collaborative, and the National Cancer Action Team. An external reference group of clinicians
Monthly 62 Day Performance

(Monthly CWT-Db provider based statistics)
100.0%
% Performance
95.0%
90.0%
85.0%
80.0%
75.0%
Jul-06
Jun-06
May-06
Apr-06
Mar-06
Feb-06
Jan-06
Dec-05
Nov-05
Oct-05
Sep-05
Aug-05
Jul-05
Jun-05
May-05
70.0%
Month
PerformanceAll Providers
Threshold
Fig. 7.4 Improvement in achievement of the 62 day cancer waiting time target.
and managers was also set up. The profile of cancer waiting times was raised throughout the NHS
by making the targets a key deliverable. The importance was stressed by Ministers, senior civil
servants, the National Cancer Director, and by the Healthcare Commission who were responsible
at that time for performance rating of NHS Trusts.
Weekly monitoring of performance from all hospitals was introduced ensuring that Trusts
reported forward looking information on patients progress through the care pathway, rather
than simply reporting after the event that a patient had missed the target time. The Cancer
Services Collaborative worked with demonstrator sites in each Strategic Health Authority and an
intensive support team worked with Trusts with the poorest performance.
As a result of these initiatives the proportion of patients being treated with the target time
rose rapidly, with a 95 per cent operational standard being achieved in the summer of 2006
(Figure 7.4).
Provision of world class radiotherapy services

During the 1980s and 1990s radiotherapy capacity in England had been allowed to fall substantially behind that in other developed countries, with inadequate numbers of staff (especially
therapy radiographers) and linear accelerators. In recognition of this the NHS Cancer Plan made
provision for a major increase in the number of therapy radiographers in training and provided
central funding for an unprecedented number of new linear accelerators.
Despite successful implementation of these initiatives, it was clear by around 2005 that demand
for radiotherapy was continuing to outstrip supply and that waiting times for radiotherapy were
still unacceptably long. A National Radiotherapy Advisory Group (NRAG) was therefore established to assess future requirements and make recommendations on the way forward. The NRAG
recommended that capacity should increase by around 80 per cent by 2016, with an immediate
need to expand capacity by around one third. These recommendations were accepted by Ministers
and form part of the Cancer Reform Strategy [27].
As a result of this each cancer network has been asked to draw up a plan consistent with the
NRAG recommendations. Strategic Health Authorities (SHAs) have been asked to coordinate
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network plans. The National Cancer Action Team will then review all plans to ensure adequate
capacity will be available across the country.
As a further driver for change the scope of the current waiting time standards is being extended
to incorporate second and subsequent treatments for cancer, thereby capturing all radiotherapy
treatments.
Provision of access to cost effective new medicines

In the late 1990s there was widespread concern that decision making by health authorities
regarding funding for novel cancer drugs was very variable, creating a so-called postcode lottery
of care. This meant that funding decisions depended on where a patient lived rather than on
clinical need. This applied to around 15 chemotherapy treatments licensed since 1993 (when
paclitaxel first received a licence in England). As a result of this the Government asked the newly
established National Institute for Clinical Excellence (NICE) to assess the cost effectiveness
of these drugs.
Although the large majority of these drugs assessed in the first few years of NICEs existence
received a positive appraisal, by 2003 it was apparent that despite NICE guidance there were
unacceptable variations in the uptake of these drugs across the country [30]. This resulted in
sustained media criticism partly fuelled by patient groups. A study undertaken by the National
Cancer Director confirmed this [31]. However, the cause of the variation was not that some
Primary Care Trusts (PCTs) were refusing to pay for NICE-approved drugs. Rather, there was
poor local capacity planning and considerable variation in clinical practice [31].
Feedback of this benchmarking information to cancer networks almost certainly had a positive
impact, as a follow up study in 2006 showed that uptake had increased markedly and variation
between networks had decreased [32].
Despite these positive changes, concerns about access to new medicines reached a climax early
in 2008. The main concerns were that:
New cancer drugs which were available in other developed countries were not available in
England.
A small number of patients who were choosing to pay for drugs which were not funded by the
NHS were being denied any NHS care.
The interval between licensing and NICE providing guidance on drugs was unacceptably long.
Primary Care Trusts were making varied judgements on funding of drugs which had not yet
been appraised by NICE, creating a further postcode lottery.
In response to these concerns, the Secretary of State for Health asked the National Cancer
Director to undertake a review of these issues. His report made 14 recommendations which
should improve access to new medicines and ensure that no patients are denied NHS care [33].
These recommendations have been accepted by the government, but it is still too early to judge
how effective these measures will be.
The role of charities

The United Kingdom is fortunate to have three major cancer charities each with a distinctive
profile, but each also having a commitment to work in partnership with the Department
of Health and the NHS on cancer more widely. These are Cancer Research UK (research and
information), Macmillan Cancer Support (information and support for patients and carers),
and Marie Curie Cancer Care (End of Life Care). There are also multiple smaller charities which
generally focus on single cancer types (e.g. Breakthrough Breast Cancer and the Prostate Cancer
Charity), on specific patient groups (e.g. Cancer Black Care and the Teenage Cancer Trust), or on
end of life care (e.g. voluntary hospices).
The charities both individually and collectively have contributed very significantly to progress
on cancer in England since 1995. These contributions include:
Innovation and service development for example, Macmillan Cancer Support has been
very influential in establishing clinical nurse specialist posts; Marie Curie Cancer Care has
pioneered new approaches to end of life care and the Teenage Cancer Trust has supported the
development of specialist units for teenagers and young people with cancer.
Ongoing service delivery for example, voluntary hospices make a very substantial contribution to the delivery of specialist end of life care services for patients with cancer.
Patient information Many charities provide patient information, but of greatest significance
is the partnership led by Macmillan Cancer Support (which now incorporates CancerBackup),
Cancer Research UK, the National Cancer Action Team, and the NHS cancer networks. This
partnership, which also involves other cancer charities, has the potential to provide information materials related to different phases of the cancer care pathway through a dedicated
electronic platform to all health professionals and patients.
Research See next section.
Advocacy This has been an area of major development over the past decade. Charities have
raised the general profile of cancer substantially through surveys that have shown it to be
the most frequently reported concern amongst the public. Charities have also run effective
targeted campaigns related to smoke-free legislation (Cancer Research UK) and the impact of
cancer on individuals financial position (Macmillan Cancer Support). Most recently charities
have worked collectively to lobby for a second Cancer Plan (see following paragraphs).
Progress on research
Progress on cancer research in the UK over the past decade is an excellent example of partnership
working between government and the voluntary sector. In response to concerns about the
coordination of cancer research a Cancer Research Funders Forum was established in 1999
bringing together the Department of Health, the Medical Research Council, and the major
charities contributing to cancer research. An early success from that initiative was a review
of opportunities for research into prostate cancer which resulted in increased investment and
establishment of new research collaboratives.
Building on this a National Cancer Research Institute (NCRI) was launched in April 2001, as
a partnership organization bringing together government, charities, and industry. This was never
intended to be a large bricks and mortar institute, but rather a largely virtual organization (with
a small secretariat) to ensure greater coherence in research efforts.
Key outputs from the NCRI include:
Establishment of a national cancer research network (largely funded by the Department of

Health). The initial aim was to double the number of patients entered into clinical trials and
other well designed studies from a baseline of 3.75 percent within three years. This was
achieved ahead of target and accrual stood at 11.2 per cent in 2006-07. Provision of additional
data managers and research nurses across the country has been one of the key factors in this
achievement.
Establishment of a cancer research database to which all partners contribute, using the same
coding structure as that used by the National Cancer Institutes in the United States and
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Canada. This led to the publication of a first strategic analysis in 2002 giving a comprehensive
picture of research in the UK [34].
Reviews into opportunities for research in under-funded areas including prevention [35],
supportive and palliative care [36], lung cancer [37], and radiotherapy and radiobiology [38].
Each of these reviews had led to new research initiatives.
Informatics and bio-banking initiatives.
The establishment of a National Cancer Intelligence Network. This is a partnership organization involving regional cancer registries and clinical groups. The NCIN oversees collation and
analysis of cancer data at a national level.
A network of experimental cancer medicine centres.
Enhanced consumer involvement in research.
Improved international collaborations through the International Cancer Research Partnership.
A successful annual NCRI conference.
A strategic plan for 2008 to 2013 [39].
The cancer reform strategy

Development of a second cancer control plan
By late 2005 it was apparent that many of the targets and commitments from the NHS Cancer Plan
had been achieved or were on track to being achieved. Concerns arose in the cancer community that
momentum might be lost, despite there being much more to be done: a cancer community which
had become stronger over the years of the plan. A Cancer Campaigning Group comprising around
30 cancer charities started lobbying for a second cancer plan [40]. In response to this, in December
2006 the government announced the development of a Cancer Reform Strategy (CRS).
It is important to note that the NHS was facing a potential overspend at the time of this
announcement. The government wanted to make it clear that this new national strategy would
be different from the NHS Cancer Plan. Although it was recognized that expenditure on cancer
would inevitably rise with increasing incidence and the introduction of new treatments, there
should be no expectations that the strategy itself would contain commitments on additional
expenditure.
Apart from the challenging financial position, the NHS had changed radically between 2000 and
2007. Any new cancer strategy would need to reflect this. In 2000 the NHS was a monopoly
provider of clinical services as well as being the funder of services. By 2007 some elective surgery
was being outsourced to independent sector treatment centres, as were some diagnostic services
(e.g. some MRI scanning and PET CT scanning) with funding from the NHS. A system of standard
tariffs for different procedures had been introduced and patients were expected to be given choice
in relation to hospitals. The emphasis of government policy was starting to change from capacity
building to improve access to a greater focus on fair, personalized, effective, and safe services [41].
There was also increased emphasis on supporting local change from the centre rather than instructing it and on making the best use of resources [41]. The Cancer Reform Strategy was also to be
developed in parallel with a comprehensive End of Life Care Strategy, covering all conditions
including cancer [42]. End of life care is therefore not a major theme of the CRS.
The approach to development of the CRS was much more inclusive and consultative than that
taken in 2000 for the NHS Cancer Plan. Cancer charities, service users, cancer networks and
health service managers played a major part alongside cancer experts. A formal advisory board
was established along with working groups covering awareness and early detection, new service
THE CANCER REFORM STRATEGY
models, patient experience, clinical outcomes measurement, commissioning, and costs and
benefits. Groups related to individual cancer sites were charged with developing visions for
relevant services for the year 2012.
Contents and commitments

The CRS builds on progress achieved following the NHS Cancer Plan. It deliberately sets a direction for only five years (to 2012), as it was felt that it was realistic to predict what would be needed
over that time scale. The strategy is unashamedly ambitious, aiming to deliver world class services
and outcomes. It recognizes both the challenges related to the increasing incidence of cancer and
the opportunities afforded by new scientific developments.
The NHS Cancer Plan had necessarily focused largely on the most pressing problems of
its time, namely increasing capacity, reducing waiting times and the firm establishment of the
infrastructure of MDTs and cancer networks. The CRS commits to going further in these areas,
but gives new emphasis to what happens to patients before they are referred to hospital and after
completion of primary treatment.
The CRS contains seven key areas for action:
1 Prevention: Consultation on the next steps for tobacco control following the introduction
of smoke-free legislation in 2007 was announced, together with additional funding for the
prevention of skin cancer. Other work on prevention (diet, obesity, and physical activity) is
being dealt with separately.
2 Diagnosing cancer earlier: In addition to further improvements to the national screening
programmes for breast, cervical, and bowel cancer, the CRS puts particular emphasis on
earlier diagnosis of patients with symptoms. Over 90 per cent of all patients with cancer
present symptomatically. There is a considerable body of evidence indicating that the poor
survival rates observed in the United Kingdom [15] are to a large extent attributable to
patients in the United Kingdom having more advanced disease at the time of diagnosis than
their European counterparts. To take forward work in this area a National Awareness and
Early Diagnosis Initiative has been launched.
3 Going further on cancer waits: The scope of the 31 day target set in 2000 has been extended
to cover all treatments for cancer, not just the first treatment. The scope of the 62 day target
has also been widened, so that more patients will benefit.
4 Better treatment: Commitments are made which will improve the quality of surgery, radiotherapy, and chemotherapy services.
5 Living with and beyond cancer: A new National Cancer Survivorship Initiative was
announced.
6 Reducing cancer inequalities: A new National Cancer Equality Initiative was announced to
tackle the inequalities in outcomes according to race, age, gender, disability, religion, sexual
orientation, and socio-economic status.
7 Delivering care in the most appropriate setting: A major shift towards more ambulatory
cancer care is envisaged. NHS Improvement is leading an initiative to transform inpatient
care by reducing avoidable admissions to hospital and by reducing lengths of stay.
Two major drivers for implementation are set out in the CRS. These are:
1 Collection and publication of better information on clinical outcomes and on patient
experience. The collection of defined datasets by MDTs will be mandated, with the relevant
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information being sent to cancer registries and to the National Cancer Intelligence Network.
A regular patient experience survey programme will also be instituted.
2 Stronger commissioning by PCTs working through cancer networks. It is recognized that
commissioning of cancer services is highly complex.
National support for local commissioning is being strengthened. An electronic cancer commissioning toolkit has been made available to the NHS.
It is too early to assess the impact of the CRS. However, the strategy has been widely welcomed
by stakeholders and progress in the first year has generally been judged to be satisfactory [43].
All the national initiatives announced in the strategy are now underway. The model of partnership working which characterized the development of the strategy is continuing into implementation, though this will not stop individual partners making their views known should progress not
be satisfactory.
Personal reflections on change

Twenty years ago cancer services and outcomes in the United Kingdom lagged significantly
behind those in other countries, but this was not recognized at the time. Since 1995 strenuous
efforts have been made to catch up, with the direction being set first by the Calman-Hine report
and subsequently by the NHS Cancer Plan and the Cancer Reform Strategy. There is no doubt
that progress has been made, but it is not yet possible to say how much the gap with other developed countries has closed. Most knowledgeable observers in England believe that the gap will
have been narrowed but not eliminated. In addition, though less frequent, I still hear too many
individual reports of suboptimal care.
No single factor accounts for the progress that has been made. In my view the most important
factors are:
Direction: Having a clear national strategy and ensuring that it is both comprehensive and
up to date.
Political commitment: This has been consistent in this country for well over a decade and
is reinforced by the high priority the public places on cancer care. The strong personal
commitment of two Prime Ministers has been of enormous value.
Leadership at national and local levels.
Strong advocacy especially from the cancer charities.
Relentless interest from the media.
National support for local implementation through the National Cancer Action Team, The
Cancer Screening Programme, NHS Improvement, and the National Cancer Intelligence
Network.
Targets and rigorous performance management of key deliverables.
National guidance, standards and peer review.
Funding to increase capacity where necessary and for national training initiatives.
Monitoring: The data available now to monitor progress on cancer both nationally and locally
is much better than it was a decade ago. However, further improvements are urgently needed
so that meaningful comparisons of clinical outcomes can be made.
Scrutiny, both internally within the Department of Health and externally by advocates,
parliamentarians, the National Audit Office, and the Care Quality Commission.
REFERENCES
Even with all these factors pushing in the same direction change has not always been straightforward. It has required a great deal of very hard work by thousands of NHS staff to make the
changes that are now benefiting patients. However, building on this progress and with the new
initiatives now underway the goal of achieving world class outcomes is now realistic.
References
1 Berrino F, Sant M, Verdecchia A, Capocaccia R, Hakulinen T & Esteve J (1995). Survival of cancer
patients in Europe The EUROCARE study, IARC Scientific Publications No. 132 Lyon, France.
2 Berrino F, Capocaccia R, Esteve J, et al (1999). Survival of cancer patients in Europe The
EUROCARE-2 study, IARC Scientific Publications No. 151, Lyon, France.
3 Berrino F, Capocaccia R, Coleman MP, et al (2003). Survival of cancer patients in Europe
EUROCARE-3 study, Ann Oncol, 14(suppl.5):1155.
4 Berrino F, De Angelis R, Sant M, et al (2007). Survival for eight major cancers and all cancers combined
for European adults diagnosed in 199599: results of the EUROCARE-4 study. Lancet Oncol, 8:77383.
5 Verdecchia A, Francisci S, Brenner H, et al (2007). Recent cancer survival in Europe: a 200002 period
analysis of EUROCARE-4 data. Lancet Oncol, 8:78496.
6 A policy framework for commissioning cancer services (The Calman-Hine Report). Department of
Health 1995.
7 Richards M A, Baum M, Dowsett, et al (1994). Provision of breast services in the UK: the advantages
of specialist breast units, Report of a working party of the British Breast Group, The Breast (suppl.).
8 The New NHS: Modern, Dependable, Department of Health. December 1997.
9 Spurgeon P, Barwell F, & Kerr D (2000). Waiting times for cancer patients in England after general
practitioners referral: retrospective national survey. BMJ, 320:83839.
10 Referral guidelines for suspected cancer (1999). Department of Health.
11 Patient centred cancer services? What patients say (1996). National Cancer Alliance.
12 Taylor D & Mossman J (1997). Living with cancer: A discussion paper on the implementation of the
Chief Medical Officers Expert Advisory Groups recommendations on cancer services and the
development of patient centred care (BACUP).
13 Coleman M P, Babb P, Damiecki P, et al (1999). Cancer survival trends in England and Wales,
19711995: deprivation and NHS Region. p. 695. The Stationery Office, London.
14 Challenging Cancer (1999). Department of Health.
15 NHS Cancer Care in England and Wales: National Service Framework Assessments No. 1 (2001).
Commission for Health Improvement and the Audit Commission. The Stationery Office.
16 National surveys of NHS patients (2002) cancer: National overview 19992000. Department
of Health.
17 Smoking kills (1998). Department of Health.
18 Saving Lives: Our Healthier Nation (1999). Department of Health.
19 The NHS Cancer Plan: A plan for investment, a plan for reform (2000). Department of Health.
20 The NHS Plan: A plan for investment, a plan for reform (2000). Department of Health.
21 Tackling Cancer in England: Saving more lives (2004). National Audit Office.
22 Tackling Cancer: Improving the patient journey (2005). National Audit Office.
23 The NHS Cancer Plan: A progress report (2005). National Audit Office.
24 Peer Review of Cancer Services: A national overview (2002). Department of Health.
25 The Manual for Cancer Services, National Cancer Action Team (2004).
26 National Cancer Peer Review Programme 20042007. National Cancer Action Team 2008.
27 Cancer Reform Strategy, Department of Health. December 2007.
28 Waiting times for cancer: Progress, lessons learned, and next steps (2006). Department of Health.
29 High Quality Care for All: NHS Next Stage Review final report. Department of Health. June 2008.
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30 The NHS Cancer Plan: Three year progress report (2003). Maintaining the momentum. Department
of Health.
31 Variations in usage of cancer drugs approved by NICE (2004). Report of the review undertaken by
the National Cancer Director. Department of Health.
32 [Variations report 2006]
33 Improving access to medicines for NHS patients: A report for the Secretary of State for Health by
Professor Mike Richards (2008). Department of Health.
34 Strategic analysis: An overview of cancer research in the UK directly funded by the NCRI partner
organisations (2002). National Cancer Research Institute.
35 Prevention and risk research in the UK: Report of the NCRI Strategic Planning Group on prevention
and risk (2004). National Cancer Research Institute.
36 Supportive and palliative care research in the UK: Report of the NCRI Strategic Planning Group on
supportive and palliative care (2004). National Cancer Research Institute.
37 Lung cancer research in the UK (2006). National Cancer Research Institute.
38 Rapid review of radiotherapy and associated radiobiology, National Cancer Research Institute 2008.
39 NCRI Strategic Plan 20082013. National Cancer Research Institute. 2008.
40 Preparing for a second plan: Maintaining the momentum in cancer policy. Cancer Campaigning
Group. August 2006.
41 Our NHS, Our Future, NHS Next Stage Review interim report. October 2007.
42 End of Life Care Strategy: Promoting high quality care for all adults at the end of life. Department of
Health. July 2008.
43 Cancer Reform Strategy: Maintaining momentum, building for the future first annual report.
Department of Health. December 2008.
Chapter 8
Population-based cancer control and the

role of guidelines towards a systems
approach
George P. Browman, Melissa Brouwers, Batrice
Fervers, Carol Sawka1
Clinical Practice Guidelines have been defined as systematically developed statements to assist
practitioner and patient decisions about appropriate health care for specific clinical circumstances [1]. This definition places guidelines within the context of healthcare decisions at the
clinical level that is, between a healthcare provider and an individual patient.
Cancer control, on the other hand, the focus of this book, is defined as the development
of integrated population-based approaches to reduce the incidence and mortality from cancer
and to minimize its impact on affected individuals and on the community, signalling broader
population-level concerns about disease control, and healthcare decisions at the organizational
and policy levels.
In this chapter, we explore the role of guidelines beyond the clinician-patient context and profile several ongoing guideline initiatives to illustrate how cancer guidelines are being integrated
into broader cancer control activities.
Practice guidelines in perspective: moving beyond the

clinician-patient interface
The expectation and the experience
The expectation
The popularization of clinical guidelines was stimulated by documented unexplained geographic
variations in clinical practice patterns that might jeopardize optimal outcomes [2], and by
expectations that as the evidence-based movement advanced [3], there would be cost savings as
unsubstantiated practices and premature dissemination of expensive technologies came under
better control [4].
If such hopes were to be realized, then population-based cancer control would improve in two
ways: first, through the aggregated improvements in individual outcomes to produce measurable
1
George P. Browman MD, University of British Columbia and BC Cancer Agency, Vancouver Island
Cancer Centre, Victoria, British Columbia, Canada; Melissa Brouwers, PhD, Associate Professor and Head
of Health Services Research, Department of Oncology, McMaster University, and Provincial Director,
Program in Evidence-based Care, Cancer Care Ontario, Hamilton, Ontario; Batrice Fervers MD, PhD
Centre Lon Brard, EA 4129 Sant, Individu, Socit, Universit de Lyon, Lyon, France; Carol Sawka
MD, Professor of Medicine, University of Toronto, and VP Clinical Programs and Quality Initiatives,
Cancer Care Ontario, Toronto, Canada.
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POPULATION-BASED CANCER CONTROL AND THE ROLE OF GUIDELINES TOWARDS A SYSTEMS APPROACH
improvements at the population level; and second, as freed-up resources were shifted from
the inappropriate application of relatively ineffective interventions towards more effective
population-based strategies.
The experience
The original promise of clinical guidelines has not been achieved to the extent expected, mainly
because of the nave hope that guidelines, once produced, would automatically have their intended
influence.
In response, there is an emerging trend towards more proactive approaches to guidelines
through implementation and monitoring their uptake. This has led to the design of instruments
to measure their quality [5], emphasis on health and healthcare quality indicators and monitoring
[6], and integrating the emerging field of knowledge translation2 into planning. Guideline
programmes in the area of cancer are leading such initiatives. These programmes share a common
feature they treat guidelines as only one element of an integrated system for improving cancer
outcomes, and cancer control at the population level. They recognize that to be effective, guidelines cannot be passively relied on as stand-alone products, but must be considered within the
context of a system-wide strategy for improved cancer outcomes at an affordable investment.
Here we provide a modified definition of guidelines for cancer control, and examples to illustrate the integration of guidelines with cancer control activities, including the contrasting roles
that guidelines play when applied to population-based as opposed to clinical decision processes.
Contrasting the role of guidelines for individual practice versus

population-level cancer control
Definition guidelines for cancer control
For cancer guidelines to be applied effectively in population-based cancer control a broader
definition is needed. We propose, Systematically developed statements, informed by research
evidence, values and local/regional circumstances to assist fair decisions and judgments about
cancer control at the clinical, management and policy levels.
This definition acknowledges the more influential role of inputs other than research evidence
into population level decisions, and highlights the importance of processes (fairness) for decision
making at the broader level; however, the revised definition continues to support the notion of
systemized processes that factor research evidence into recommendations for population-based
cancer control.
Contrasting the utility of guidelines for informing decisions

at the clinical (individual) and policy levels the case of funding
new and expensive cancer drugs
The funding of new and expensive cancer drugs is a topic dominating the agendas of patient
advocacy groups, the media, oncologists, healthcare managers, and insurers, including
government programmes, and serves to highlight the difference between individual level and
population-based decisions based on the same evidence [79].
The Canadian Institutes of Health Research define knowledge translation as a dynamic and iterative
process that includes synthesis, dissemination, exchange, and ethically sound application of knowledge to
improve the health of Canadians, provide more effective health services and products and strengthen the
health care system.
GUIDELINES AND CANCER CONTROL ONGOING INITIATIVES IN INDUSTRIALIZED COUNTRIES
From the clinical perspective, guideline recommendations primarily intended to promote

the most appropriate care for an individual would be based on evidence that maximizes the
clinical benefit for the individual (survival, quality of life, recurrence-free interval) by a clinically
meaningful amount. Issues of cost are usually ignored.
However, if the intervention, such as an expensive drug, produced clinically meaningful but
relatively small benefits for individuals, while using up resources that could be applied towards
interventions with more impact then the population might be better off health-wise, if the dollars
were shifted to these purposes. Such choices are particularly acute in publicly funded health care
contexts.
Thus, the best clinical decision (for the individual patient eager to experience the potential
benefit of the drug, even if small) would be to offer the treatment; but the most appropriate policy
decision might be otherwise when the populations interests are considered. Which of these
contrasting perspectives wins out depends on how various health systems and reimbursement
mechanisms are arranged and on the fundamental values adopted by the society at large.
Up to now, policy makers have been appropriating guidelines originally developed to inform
clinical decisions to make population decisions. This has led to some tension between the individuals interests and those of the population at large. In response, formal processes are needed
to set priorities in a manner perceived by stakeholders as fair [1018] and tools are required to
better facilitate clinical level factors into population decisions [11,12,15,16]. Further, what both
individuals and policy makers need to factor into such decisions is the value attached to the
benefit for both the individual and the population and the relative position of, or weight afforded
to, each perspective in the decision-making process. Technology assessment, of which guidelines
are an integral part, is one strategy to address this dilemma [19].
Guidelines and cancer control integrating guidelines into

cancer control the cancer guidelines system
We propose here that the effective use of guidelines for cancer control requires a shift of emphasis
from the guideline per se as a stand-alone end product towards its role as one element of
a decision-informing system.
Considering guidelines from a systems perspective would call for better balancing investments
in guidelines among their development, implementation, updating and monitoring phases, and
achieving a better balance across clinical and programmatic/policy decisional needs (e.g. whether
to implement a screening programme). Implementation would include strategies for knowledge
translation, and monitoring the use of guidelines and their effects on population-level outcomes.
Finally, the systems approach would pay heed to the ethical frameworks required for fair
decision-making processes [e.g. 11,12,1416,18].
Guidelines and cancer control ongoing initiatives in

industrialized countries
In this section, we describe four programmes in the guidelines movement that illustrate guidelines as a key component to advance cancer control system activities:
1 The Canadian Partnership Against Cancer, Canadian Strategy for Cancer Control (http://
www.partnershipagainstcancer.ca/)
2 The Cancer Care Ontario Program in Evidence-based Care [20] (www.cancercare.on.ca)
3 The French guidelines programme SOR [21]
4 European cooperation Co-CAN CPG (http://www.cocancpg.eu/)
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These programmes illustrate, in practical terms, advancements in methods and procedures

and the shift towards collaboration for integrating guidelines into systems approaches for cancer
control.
The Canadian Partnership Against Cancer a national

cancer control strategy
The Canadian Strategy for Cancer Control (the Strategy) was a grass-roots movement of
stakeholders that recognized the need for the country as a whole to examine and prepare for the
burgeoning cancer problem from a broader national perspective while respecting the political
autonomy of the individual provinces that are ultimately responsible for health care delivery in
their regions. The report produced by the Strategy led to federal funding for the Canadian
Partnership Against Cancer (the Partnership http://www.partnershipagainstcancer.ca/) to
carry out the recommendations of the Strategy. These recommendations called for action in
several priority areas, one of which was guidelines.
The Cancer Guidelines Action Group (CGAG) is one of now eight Action Groups of the
Partnership, and here we describe its approach to using guidelines as part of a cancer control
strategy.
The CGAG vision and mission statements promote guidelines as vehicles for optimizing the
use of evidence in cancer control. In other words, the focus is not on guidelines as products per
se, but rather as tools for a broader agenda around facilitating healthcare decisions in which
research evidence plays an important role. In this context, the CGAG considered guidelines
within the framework of knowledge translation approaches.
To promote the optimal use of evidence in decisions about cancer control from a broader
pan-Canadian perspective, while respecting the authority of the regions, the CGAG decided to
promote both cooperative and collaborative cross-jurisdictional activities using a bottom-up
rather than authoritarian approach. The approach involves the following elements:
Capacity enhancement: to achieve more equitable distribution of expertise and skills related
to guideline activities across geographic regions requires educational and knowledge transfer
materials and venues
Technology platforms: to facilitate knowledge exchange and sharing, skills development, and
real time collaboration requires technological/communications infrastructures
Tools: in addition to technology platforms to facilitate affordable and uniform processes for
locally relevant guideline activities,
Social platforms: to promote sustainable interactions through functional social networks
(communities of practice) [22]
Figure 8.1 presents a conceptual model of the relationship among the ongoing national projects
of the CGAG, which are designed around the aforesaid elements.
A brief description of the projects follows. Foundational projects are the necessary platforms
required for the success of other projects. The legacy project is intended to initiate a set of
pan-Canadian relationships, both formal and informal, to promote sustainable collaboration
based on equitable distribution of expertise across regions. Other projects are intended to
produce more immediate benefits that can be measured over the first five years.
Social networking and measurement foundational

This project will create and evaluate communities of practice as social platforms within and across
regions to promote sustainable collaborations at the broader national level for the purpose of
Connectivity of projects cancer guidelines action group
Immediate Layer
Individual project
deliverables
Synoptic
reporting
Resource
allocation
tools
Legacy Layer
Sustainability;
continuous learning/
evolution
Foundational Layer
Technical and social
infrastructure
(platforms)
Best practices
Guideline casebook
Status of
adaptation
canadian
tool
guidelines
Capacity enhancement
(Guideline methods curriculum &
Training network)
Social networking/
measurement
Cancer knowledge resource

Web-based collaboration
Fig. 8.1 Canadian Guidelines Action Group diagram showing the relationships between program
components, reproduced with permission.
shared cancer control strategies that transcend regional boundaries. The methods include social
network analysis [23].
Cancer knowledge resource foundational

The purpose of this project is to provide the technology/communications infrastructure
(platform) for knowledge exchange and on-line collaboration using a suite of electronic tools.
The Resource will not only link guideline development groups, but also link all other Partnership
action groups (surveillance, prevention, cancer journey, screening, standards, targets, and human
resource planning).
Capacity enhancement legacy

The purpose of this project is to take a lead in designing venues and strategies for transferring
skills and knowledge from jurisdictions with a critical mass of expertise to those jurisdictions
where such expertise is in shorter supply. It is hypothesized that a more equitable distribution of
expertise related to guideline methods will accelerate national collaboration for a guidelines
system required for cancer control. The capacity enhancement programme incorporates three
sub-projects targeting curriculum and training objectives, formalized strategies for sharing best
practices, and creating a status report of cancer guidelines to identify quality, gaps, and duplications of effort.
Synoptic reporting
This project builds on the considerable accumulating evidence that synoptic reporting in disciplines such as pathology, imaging, and operative reports in surgery improve information transfer
for downstream clinical decision-making in contrast to traditional narrative reports [2426]. The
programme has started with five cross-jurisdictional projects in surgical oncology involving four
cancer sites (colorectal, head and neck, breast, ovary); with guidelines and other evidence tools
being integrated into point-of-care processes.
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Resource allocation tools

Guidelines are being increasingly used and appropriated by policy makers to justify policy-level
decisions, such as priorities about which new diagnostic tools or new and expensive cancer drugs
to fund. The project aims to profile existing tools available to facilitate transparent and explicit
(i.e. fair) decision-making and to enable participation of non-expert stakeholders in decision
processes related to resource allocation decisions in cancer control.
Guideline adaptation
Currently, the most advanced project, guideline adaptation is part of an international collaborative (www.adapte.org) to allow guideline development groups to use already existing guidelines
and adapt them for their own use. The purpose is to promote better awareness of the body of
guidelines that exist, but more important, to avoid duplications of effort and expense involved
in de novo guidelines development [27,28]. The project includes a manual and user guide that
carries guideline development participants through critical evaluation and development steps
that are intended to make development more efficient without compromising on the integrity of
rigorous methodologies.
What the Canadian guidelines agenda is not, and why

Some would expect a national guidelines effort to be in the business of developing national guidelines, especially where there is a desire for uniform methods and quality of products, particularly
around common issues of concern such as cancer drug funding and access, and public health
programming.
The CGAG has adopted a different strategy more targeted towards cancer control decisions
for the following reasons. In the Canadian political context individual jurisdictions for the foreseeable future will reserve the right to make autonomous decisions, and because of the different
political, social, and economic circumstances in which different jurisdictions operate, it is reasonable that recommendations from the same body of evidence could differ in important ways.
Second, the process of guideline development, properly done, is expected to produce secondary
gains in terms of focusing local practitioners and other stakeholders on regional priorities in a
disciplined way, leading to greater ownership of guidelines that are therefore more likely to be
taken up. The process of critical evaluation of evidence and guideline development also serves as
an invaluable educational tool that can further build local communities of practice and a learning
culture [29].
Third, linking guideline development groups and other stakeholders, and providing them with
tools to facilitate their work, likely will contribute to a more sustainable national culture of
collaborative participation that also helps to disseminate expertise more widely.
Finally, in the critical area of policy decisions, such as those related to cancer drug funding,
if uniform cross-jurisdictional processes are needed, then such processes should be developed
around such priority areas, and in Canada they have been (see http://www.gov.sk.ca/
news?newsId=78c1248b-7ed0-4f47-ba8d-c9d44f653728 and http://www.cancercare.on.ca/
english/home/toolbox/drugs/ndfp/cancerdrugapprov/). The Partnership is contributing to such
targeted national efforts through tools and social network development.
Program in Evidence-based Care, Cancer Care Ontario: experiences

in transition from clinical guidelines to population-based cancer
control guidance
(http://www.cancercare.on.ca/english/home/toolbox/qualityguidelines/pebc/).
Data/Information
incidence, mortality,
survival
analysis
indicator development
expert input
Performance management
institutional agreements
quarterly review
quality-linked funding
clinical accountability
Knowledge
clinical guidelines
policy advice
synthesis
planning
Transfer
publications
practice leaders engaged
policy advice
public reporting
Fig. 8.2 Cancer Care Ontario (Canada): diagram of the quality improvement strategy, reproduced
with permission of the authors.
Cancer Care Ontario, the advisory body to the Ontario government in matters related to
cancer, has embraced a cancer control strategy of quality improvement at the patient and systems
levels (see Figure 8.2). Four features characterize this strategy:
1 Data: routine and repeated monitoring of credible and meaningful population-based and
system performance measures
2 Knowledge: identification of effective cancer control options and system strategies based on
evidence
3 Transfer: design and implementation of tools and strategies to promote awareness and application of evidence-based knowledge
4 Performance: financial strategies and other incentives designed to better enable utilization of
knowledge and increase awareness of accountability
Important to this model is the explicit integration of cancer guidelines to create a cancer care
system informed by and accountable to evidence while recognizing the complexities inherent
in changing a system and the behaviours of individuals within it. That guidelines alone do not
necessarily result in change should not be unexpected; integrating them into an action and
results-oriented system increases the likelihood of success [29].
Program in Evidence-based Care guidance then and guidance now

The Program in Evidence-based Care (PEBC), the guidelines programme of Cancer Care Ontario
(CCO), has a long history of developing cancer guidelines primarily targeted at decisions made at
the patient-provider interface (i.e. clinical practice guidelines) [30,31]. Within the quality
improvement strategy of CCO, the contributions of the PEBC are most evident in the knowledge
and transfer quadrants in Figure 8.2.
More recently, the PEBC was challenged with creating advice documents designed to facilitate
decisions by system leaders to influence organizational strategies and performance measurement.
This led to new hybrid guidance documents containing components to address either organizational issues only (e.g. the centralization of surgical services for complex surgical procedures with
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a steep volume: outcomes relationship); or both organizational and clinical issues relevant to a
given topic (e.g. clinical is colorectal laparoscopic surgery as effective and safe as conventional
surgery; e.g. organizational what organizational considerations are relevant for safe and effective delivery of laparoscopic surgery such as team complement, training of team members, space
requirements, and managing surgical volumes?).
In creating hybrid documents targeted towards managers, the PEBC has retained its defining
features engagement of multidisciplinary panels, application of rigorous methodologies, and
participation of stakeholders through formal review processes [3234]. However, this venture
into organizational and system guidance has had a significant impact on how PEBC determines
priorities, who is involved in the guidance development process and the range of methodologies
employed during guidance development all lessons that highlight the transition from a clinical
to a cancer control perspective.
Priorities
As reported elsewhere, multidisciplinary panels prioritize across candidate clinical practice
guideline topics aided by explicit criteria [30,31] and by the experiences of the members. The
once mainly clinical criteria for guideline priorities driven solely by the clinical community now
include system criteria (e.g. ability to measure performance, availability of indicators, capacity to
affect change), and incorporate priorities from administrators and policy makers.
Participation in the guideline enterprise

Since its inception the PEBC has engaged the users of knowledge with its production, in order
to create communities of stakeholders who understand evidence, can apply its methods, create
recommendations and appreciate the importance of accountability between selected members of
guideline development panels and the larger professional community. The philosophy was implemented by: creating teams of clinical and methodological experts working together; and using
formal external review mechanisms that involved as much of the larger clinical community as
possible [3234].
The commitment to stakeholder engagement and its operationalization were generalized to
the development of guidance documents geared towards organizational and system issues.
However, for this transition the types of expertise required were more diverse, with the inclusion
of administrators and managers as both guidance developers and external reviewers to place
recommendations into the practical context.
Evolving methods for guidelines for population-based cancer control

The systematic review [35] has been the methodological foundation of all PEBC produced clinical
guidelines. The formally structured reviews address explicitly framed questions formulated to be
answered by analysis and interpretation of the synthesized evidence. This may also result in the
adaptation of existing guidelines uncovered during the review, a strategy which has its own comprehensive and rigorous methodology (http://www.adapte.org/ accessed August 14, 2008).
Despite the strength and continued relevance of systematic review for organizational and
system guidance, the programme recognized the need to look beyond the published literature to
consider additional methodologies for the cancer control toolbox, particularly in circumstances
(which were often the case) where little evidence existed.
This led to exploration of the role of the environmental scan an explicit and transparent
search and review of the grey literature that features descriptions of, or data related to, solving an
organizational or system problem that could be applied locally; and the development of more
formalized consensus methods.
There are now several potential methodologies within the PEBC toolbox. Choice of method(s)
is based on several factors including the quality and quantity of evidence, credibility of the
evidence source, anticipated controversy and acceptability a guidance document might elicit,
implementation plans, required change anticipated with the implementation of recommendations, and the urgency for implementation of recommendations.
Putting it all together: the case of thoracic surgery

The implications for this broader population-oriented approach to recommendations for cancer
control are effectively illustrated in a commitment by CCO to improve quality of care for thoracic
cancer surgery.
The Surgical Oncology Program (SOP) of CCO learned from clinical administrative databases
that patient outcomes were worse for those receiving complex thoracic surgery in low volume
institutions (data). This prompted the SOP to establish a formal partnership with the PEBC to
create a guidance document with recommendations for surgical volumes (knowledge). A multiprofessional panel worked together using systematic review, environmental scan, and engagement of the surgical community to create a final set of recommendations. The resulting document
was disseminated on the CCO web site (http://www.cancercare.on.ca/english/home/toolbox/
qualityguidelines/clin-program/surgery-ebs/ accessed August 14, 2008), published in a peer
review journal [36], and distributed with tools to regional leaders (transfer). As a result, considerable negotiation has been undertaken to restructure and realign the delivery of complex thoracic
surgery into fewer centres with introduction of formal pay-for-performance strategies (policy
influence and performance).
Finally, use of the guidance document was adopted as one of the quality indicators monitored
annually by the Quality Cancer System Index of Ontario (full circle of the quality improvement
strategy to return back to data (http://www.cancercare.on.ca/english/csqi2008/ accessed August
14, 2008). While more work is required, integrating higher level guidelines into a comprehensive
integrated system of quality improvement has led to measurable improvements.
Conclusion
Cancer Care Ontarios experience illustrates the gradual evolution of a primarily clinicallyoriented guidelines approach towards a guidance approach targeted at the system and organizational level. Throughout this evolution, the programme has remained true to its core principles
of transparency and explicitness, methodological rigor, and engagement of key stakeholders.
Frances SOR programme and coordination of cancer guideline

programmes in Europe
The French Standards, Options: Recommendations (SOR) programme
Frances SOR guideline programme (www.sor-cancer.fr) was established in 1993 by the Federation
of the Comprehensive Regional Cancer Centres (FNCLCC) (www.fnclcc.fr), as a primarily professional initiative within the quality improvement strategy of the 20 Comprehensive Regional
Cancer Centres [37]. In 1995, universities, general hospitals, and professional societies began to
collaborate within the programme and since 2003 guidelines have become integrated into the
national cancer clinical governance strategies of the French National Cancer Plan. In this context,
the SOR programme was transferred in 2008 to the French National Cancer Institute (INCa)
(www.e-cancer.fr).
The SOR programme encompasses the development of national evidence-based oncology
practice guidelines for the management of cancer and supportive care for adults and children
as well as the provision of evidence-based patient information.
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Evolving methods
The guideline development and updating methods of SOR [37] were developed almost simultaneously with, but independent of, the experiences described earlier for Cancer Care Ontarios
Program in Evidence-based Care. The two programme leaders became aware of each others
efforts in 1994, and began sharing experiences at that time. The SOR and PEBC methods and
principles are remarkably similar considering their independent programmatic development
[38,39]. Both use rigorous evidence-based methods of systematic review, multidisciplinary guideline development panels, methodological experts as resources and educators, and formal
community-level external review of guidelines to facilitate buy-in by practitioners. Incorporation
of the patient perspective has been tried and continues to evolve in both programmes.
The lessons learned by both the SOR and Cancer Care Ontario Programs and their separate
responses to barriers in guideline development and uptake were also similar. Like others, SOR
found that developing and updating high quality guidelines is time consuming and expensive,
requiring increasing resources over time as the inventory of guidelines (now numbering over 80)
increased. To improve the efficiency of guideline production and updating, the SOR has increasingly customized existing guidelines instead of developing them de novo using guideline adaptation methods (www.adapte.org) [27], a strategy also promoted by the Canadian Partnership
Against Cancer.
Guideline adoption and implementation

The SORs evolving methods have, like Ontarios PEBC, shifted towards implementation and
knowledge translation with the realization that cancer guidelines frequently lack applicability,
which limits their effective use [40]. To improve acceptance of recommendations by practitioners
the SOR programme has built a more formalized adoption process into its guideline development activities.
Similar to the philosophy espoused by the Canadian Partnership, and for the same reasons,
responsibility for implementation of SOR guidelines in France is regional with regional adaptation playing an important role. Guideline adaptation is intended not only to improve the
efficiency of guideline development, but in France it is used by the regional cancer networks for
tailoring national guidelines to the local care context. This participatory approach has been
shown to be effective for changing practice, in particular for the regional cancer network of the
Rhne-Alpes Region (ONCORA, http://oncoranet.lyon.fnclcc.fr/) [41,42], and it became mandatory for French cancer networks in 2007. Yet, not all regional networks currently possess the
capacity and resources to successfully carry out this implementation process and some duplication of effort persists.
From a professional to systems perspective

Like other guideline development programmes, SOR has evolved over time to address issues of
guideline implementation and utilization, both of which are important for promoting evidencebased clinical as well as broader cancer control interventions. The success of the bottom-up
approach has been acknowledged nationally by professional groups and by French national
authorities. The transfer of the SOR programme from the FNCLCC (consortium of cancer
centres) to the more broadly representative INCa, created in 2005, represents a shift in perspective with opportunities for a better focus on cancer control.
While cancer survival in France is among the highest in Europe, care varies significantly [44].
Hence, achieving uniform access to high-quality cancer care is a key purpose of the French
national comprehensive cancer plan covering the full range of cancer control. Guidelines are
central to several cancer control strategies of the plan e.g. generation of regional networks,
systematic multidisciplinary decision-making, elaboration of therapeutic protocols, and monitoring practice patterns. Nevertheless, in France guidelines remain predominantly clinicallyoriented tools designed to promote the most appropriate care for the individual. Different from
the evolution in Canada and some other countries, decisions about introducing new expensive
cancer drugs in France are currently based primarily on evidence that focuses mainly on clinical
benefit for the individual.
While the bottom-up approach of SOR has created the necessary collaborative culture and trust
as well as widespread commitment to evidence-based principles, the transfer to INCa is expected
to provide the structural component to reinforce the integration of SOR with national cancer
control system activities. Yet, it is too early to know how effective the shift from a disciplinary
professional cancer system to a broader national approach will be.
International collaboration and research efforts

Taking advantage of the funding opportunities and the vision of the European Union, the SOR
programme has made a second shift, towards international, European cooperative efforts
[5,27,28,39,43], similar in many respects to the cross-jurisdictional efforts of the Canadian
Partnership Against Cancer (described previously), and for similar reasons. The collaboration
with Cancer Care Ontario since 1994 has provided good insights into the challenges encountered
when different guideline programmes cooperate.
European cooperation Co-Can CPG: coordination of cancer

clinical practice in Europe (http://www.cocancpg.eu/)
Over the past decade most European countries have set up guideline programmes and infrastructures at the national or regional level. This has led to recognition of unnecessary duplications
of effort and strategies for trans-national cooperation at the European level. Co-Can CPG (www.
cocancpg.eu) is a European Union funded project (20062010) that aims to overcome existing
duplications and fragmentation among cancer guideline developers in Europe [43]. Co-Can CPG
is coordinated by Frances INCa with 18 partners (Ministries of Health and key national or
regional health institutes) from 11 countries (see Table 8.1).
Co-Can CPG strives to achieve its goals through the following activities designed for gradual
improvements in the level of cooperation:
Common framework for sharing knowledge, methods and skills
Shared activities for guideline development and updating
Assembling a critical mass for pertinent research into guideline methods
Appropriate framework for long term cooperation
Similar to the situation as described in earlier sections for Canada, health systems and delivery
of cancer services of the different European countries vary widely as well as outcomes achieved
both within and between countries [44], and disparities grow as the Union expands. Within the
European community there are different traditions of evidence-based guideline development
and implementation, variability of where guidelines are located in the cancer control system and
different levels of accountability. Consequently, setting up cross-jurisdictional cooperation
among guideline programmes involves carefully examining how trans-national activities can
improve effectiveness of guideline development and utilization to maximize benefits for cancer
control.
163
164
Table 8.1 Participants in the Co-Can CPG project (www.cocancpg.eu/)

Country
Organization
Belgium
Federaal kenniscentrum voor de gezondheidzorg Centre Fderal dExpertise des

Soins de Sant (Belgian Health Care Knowledge Center)
Canada
Direction de Lutte Contre le Cancer du Qubec
France
Institut National du Cancer (National Cancer Institute) coordinator

Fdration Nationale des Centres de Lutte contre le Cancer (French Federation of
Comprehensive Cancer Centers)
Haute Autorit de Sant (National Authority for Health)
Germany
Institute for Quality and Efficiency in Health Care
Hungary
Egeszegugyi Miniszterium (Ministry of Health)

Orszagos Onkologia Intezet (National Institute of Oncology)
Israel
Ministry of Health
Italy
Agenzia Sanitaria Regionale Regione Emilia Romagna

Istituto Superiore de Sanit (National Institute for Health)
Lithuania
Institute of Oncology, Vilnius University

Lietuvos Respublikos Sveikatos apsaugos ministerija (Ministry of Health)
Netherlands
Vereniging van Integrale Kankercentra (Association of Comprehensive Cancer Centres)
Spain
Agencia de Evaluacin de Tecnologas Sanitarias de Andaluca (Andalusian Agency for

Health Technology Assessment)
Agncia de Avaluacie de Tecnologia i Recerca Mdiques (Catalan Agency for Health
Technology Assessment and Research)
United Kingdom
NHS Quality Improvement Scotland

National Institute for Health and Clinical Excellence
Joint activities for guideline development and updating

The Co-Can CPG collaborative has identified through surveys that evidence synthesis and monitoring for new evidence are considered the most costly and time consuming steps in guideline
development, but also have the best potential for cooperation. For the reasons advanced by the
Canadian Partnership Against Cancer (Cancer Guidelines Action Group), Co-Can CPG also
decided not to engage in European guideline development, but to focus on regional enabling
strategies for guideline uptake within socially, culturally, and economically diverse settings.
As a basis for implementing joint activities, Co-Can CPG has adopted international tools e.g.
the AGREE instrument (www.agreetrust.org) [5] and the ADAPTE process (www.adapte.org)
[27, 28]. Formal comparison of methods has enabled Co-Can CPG members to develop common
standardized processes to guarantee the quality of joint production as well as to define areas for
joint research and development.
Similar to Canadas experience, capacity-building has been pursued through joint training
activities and exchange of programme personnel in order to achieve more equitable distribution of
expertise, and thus foster the trust in competence of others required for successful cooperation.
SUMMARY
The future identification of evidence gaps to inform future

clinical research: closing the loop
The experience of the Co-Can CPG members reinforces the importance of the linkage between
guidelines and cancer treatment systems and the role played by research. One of the limitations
of the evidence-based approach to guidelines is the lack of high-quality research evidence for so
many interventions. To address this, Co-Can CPG, led by researchers at the UK National Institute
of Health and Clinical Excellence, plans a systematic approach to explicitly identifying evidence
gaps and uncertainties in a way that can usefully inform the development of future cancer clinical
research.
Conclusion
Through the development of transnational cooperation Co-Can CPG is responding to current
duplication of effort in guideline development. The elaboration of a common evidence-base at
the European level will provide support for the coherent development of guidelines and policies
at national and regional levels. The Co-Can CPG experience is intended to foster better understanding of the regional and organizational circumstances and values that lead to legitimate
inconsistencies between guideline recommendations based on the same evidence.
If the partners succeed in overcoming current barriers to effective cooperation e.g. variability
of settings and expertise, organizational system commitment, and language barriers Co-Can
CPG has the potential to become a strong instrument to support cancer control activities through
guidelines at the European level.
Summary
This chapter addresses the continuing transition of the cancer guidelines movement in North
America and Europe to bring evidence to both clinical and higher level decisions for improved
cancer control at the management and policy levels. The chapter highlights principles involved in
shifting from the clinical to the population-based cancer control perspective when considering
the utility of guidelines. Four examples are reviewed to illustrate programmatic initiatives designed
around guidelines to advance cancer control. These initiatives highlight future directions in the
guidelines movement as part of a systems approach to improving cancer control. We have
pointed out the contrasting roles of guidelines intended to inform broader policy level as opposed
to clinical level decisions and we have highlighted some of the issues to be faced in this
transition.
The example of Cancer Care Ontarios Program in Evidence-based Care highlights a more
advanced agenda committed towards the population perspective in which guidelines are being
redefined, and deployed as part of broader quality monitoring and improvement strategies at the
policy level. Canadas Partnership Against Cancer highlights attempts to incorporate guidelines as
part of a national cancer strategy, while the experiences of Frances SOR programme, still very
much focused on guidelines as clinical tools, illustrates significant changes in administrative
arrangements at the government level to coordinate guidelines as part of a national cancer plan.
As described, there have been effective international collaborations among guideline programmes
(Cancer Care Ontario and FNCLCC; Cancer Care Ontario and the American Society of Clinical
Oncology), and there are emerging in Europe multinational cooperative efforts to make guidelines more useful and more effective for cancer control.
Close examination by the reader of the stories told about how different guideline programmes
are evolving should provide clear insights about the future of guidelines as an element of populationbased cancer control strategies.
165
166
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Chapter 9
The optimal provision of cancer

treatment services
Michael Barton, Geoff Delaney1
The optimal provision of cancer services to a population means that services such as screening,
surgery, chemotherapy, or radiotherapy are delivered in the type and amount that meets local
demand. Estimating demand requires knowledge of the types and numbers of cancers and the
indications for services. For example, the demand for breast screening can be calculated by determining the number of women aged 50 to 70 years. It is more complicated to determine the demand
for services such as radiotherapy or chemotherapy that have a large number of indications relevant
to small proportions of the cancer population. Different populations will have different incidence
rates of cancer, and the proportions of the common types of cancer may vary. In addition, factors
relating to specific groups of patients such as performance status and co-morbidities may alter
treatment recommendations. Studies have shown that control rates of cancer may be influenced
when delays in treatment occur [1,2] and therefore the planning of sufficient services to meet the
needs of the treatment population is vital to providing optimal care.
Approaches to estimating demand have included using expert opinion and examining
well-serviced areas [3,4]. Expert opinion is subject to limitations of knowledge, bias, and lacks
a strong evidence-based rationale. It is unknown how appropriate the levels of service provision
and patient access are in well-provided areas. Without an evidence-based approach, it is not
known whether apparently well-serviced areas are over-serviced, correctly serviced to meet
demand, or under serviced.
This chapter describes an evidence-based approach to estimating the demand for cancer
services and its application to different treatment modalities and different populations. The work
was done mainly for Australia, but has been adapted and used in Europe and North America.
Cancer services include all cancer control interventions such as screening, early detection,
diagnosis, treatment, palliation, and rehabilitation. We will describe in detail the estimation of
demand for radiotherapy and give examples of how this approach has been adapted to other
modalities and other populations.
Background
The actual proportion of incident cases that receives radiotherapy varies almost two-fold within
and between jurisdictions. In Ontario, Canada, in the period 1984 to 1991, the proportion
Michael Barton, OAM, MBBS, MD, FRANZCR, Professor of Radiation Oncology, South West Sydney
Clinical School, University of New South Wales, Sydney, New South Wales, Australia; and Geoff Delaney,
MBBS, MD, PhD, FRANZCR, Professor and Director of Cancer Services, Sydney South West Area Health
Service, Liverpool, New South Wales, Australia.
170
THE OPTIMAL PROVISION OF CANCER TREATMENT SERVICES
of cases that received radiotherapy varied between counties from under 19 per cent of cases to
32 per cent [5]. Greater variation was seen in New South Wales (NSW), Australia in 1998 when
the proportion varied between health districts from 23 per cent on the mid north coast of NSW
to 54 per cent in southern NSW [6].
Benchmarks for radiotherapy service provision have suggested that 50 to 55 per cent of
new cases of cancer should receive radiotherapy at least once during the course of their illness.
This has been based on expert opinion [3] and levels of service provision in well-resourced areas
[6]. Based on this approach it has been estimated that in Australia over 10,000 cancer patients per
year miss out on external beam radiotherapy [7].
A rational method of demand assessment

An alternative approach is to use the published evidence of indications for radiotherapy when
it is the treatment of choice and integrate this with population-based data on the proportion of
cancer patients with each treatment indication to develop a model of radiotherapy utilization.
This concept was first described by Tyldsley et al. [8] for lung cancer. We have used a modification of this methodology and applied it to all cancer sites.
Indications for treatment

An indication for treatment is an oncological problem for which the treatment being examined is
the treatment of choice because of superior outcomes in survival, local tumour control, quality of
symptom relief, or side-effect profile when compared with alternative treatment approaches. For
example, radiotherapy is the treatment of choice for nasopharyngeal cancer because it produces
higher cure rates than the alternatives. For the purposes of calculating the proportion of patients
who should receive a treatment at least once, the treatment could be used alone or in combination
with other anti-cancer treatments. Treatment intent may be palliative or curative (including
definitive and adjuvant intents).
In order for a treatment to be indicated, the patient must be suitable for treatment. They should
be fit enough to undertake treatment. Patient choice is difficult to model because of the risk that
patient choices in the real world will be influenced by their knowledge of local access. For example, 55 per cent of women with breast cancer in rural Australia have mastectomy compared to
45 per cent of women with breast cancer in metropolitan areas presumably because of the
difficulties of accessing radiotherapy in rural Australia [9]. Hypothetical studies of patients or
surrogates may yield results that are discordant with patients actual behaviour [10].
Evidence for indications for treatment may be obtained from national and international
evidence-based treatment guidelines. If these are not available, randomized and non-randomized
studies can be examined. The quality of the evidence should be ranked using standard evidence
rating scales [11] (Table 9.1).
The proportion of cancer cases with attributes for each treatment decision is determined from
epidemiological databases and clinical reports. The quality of the epidemiological data is also
ranked using the scale [12] shown in Table 9.2 and the highest level evidence should be used in
constructing a model. Preference is given to population-based data because it is the most representative. National cancer incidence figures, such as those published by the Australian Institute
of Health and Welfare [13] are used to determine the incidence of cancer types and tumour sites.
However, data from other jurisdictions could easily be used to modify the estimates for other
populations. Major attributes that describe large proportions of the population, such as cancer
incidence and stage proportions, are usually able to be found from high-level population-based
sources.
A RATIONAL METHOD OF DEMAND ASSESSMENT
Table 9.1 Levels of evidence for indications for radiotherapy

Level
Description
Systematic review of all relevant randomized studies
II
At least one properly conducted randomized trial
III
Well-designed controlled trials without randomization. These include trials with pseudorandomization where a flawed randomization method occurred (e.g. alternate allocation
of treatments) or comparative studies with either comparative or historical controls.
IV
Case series
Source: National Health and Medical Research Council of Australia [11].
Integration of indications and proportions

Indications can be mapped out in a tree structure using standard decision evaluation software.
The tree is broken into treatment decision points. Figure 9.1 shows a generic example. The example cancer is split into two stages; 80 per cent of cases are Localized and 20 per cent are Metastatic.
Seventy per cent of Localized cancers in the example have an indication for treatment and 30 per
cent are not fit for treatment. Therefore in this example the proportion of all patients with localized
cancers who are fit for treatment is 0.80 0.70 = 0.56 or 56 per cent. Similarly in this example the
proportion of all cases with metastatic cancer with good performance status and symptoms is 0.2
0.6 0.5 = 0.06. Overall the proportion of all cases with an indication for treatment at least once
is 0.56 + 0.06 = 0.62. For this example 62 per cent of cases have an indication for treatment.
A tree showing radiotherapy utilization for oesophageal cancer [14] is reproduced in
Figure 9.2. Each branch of the tree ends with either radiotherapy being recommended (ends with
outcome = 1) or radiotherapy not being recommended (outcome = 0). The numbers under each
branch refer to the proportion of patients that the particular branch represents and the numbers
on the far right refer to the overall proportion of that cancer that the entire branch represents.
By summing the proportions for each branch with an indication for radiotherapy (those ending
with 1) one may estimate the optimal radiotherapy rate. The model shows that radiotherapy is
indicated for 80 per cent of oesophageal cancer patients, the largest proportion being patients
Table 9.2 Hierarchy of epidemiological data
Quality of source
Source type
National epidemiological data
State or Provincial Cancer Registry
Epidemiological databases from other large international groups (e.g. SEER*)
Results from reports of a random sample from a population
Comprehensive multi-institutional database
Comprehensive single-institutional database
Multi-institutional reports on selected groups (e.g. multi-institutional clinical trials)
Single-institutional reports on selected groups of cases
Expert opinion
Source: Tyldesley [8].

*Surveillance Epidemiology and End Results registry system, in the United States (www.seer.cancer.gov).
171
172
Example cancer
Metastatic cancer
(0.20)
Localized cancer
(0.80)
Good Performance
Status (0.70)
Poor Performance
Status (0.30)
Good Performance
Status (0.60)
Poor Performance
Status (0.40)
Treatment
No treatment
Symptoms
(0.50)
No treatment
Treatment
0.56
0.06
Fig. 9.1 Example of utilization tree. Figures in brackets below each attribute are the proportion of
cases with that attribute.
without metastases and who do not undergo surgery (40 per cent of all patients) and those with
metastases and symptomatic loco-regional disease (24 per cent).
Optimal radiotherapy utilization

We have examined the evidence for the efficacy of radiotherapy for all cancers and determined
the proportion of cases of cancer with each attribute in the utilization tree from epidemiological
data from which it is possible to calculate the proportion of cases that had each indication for
radiotherapy. By summing the proportions of cases with indications for radiotherapy it is possible
to calculate the overall radiotherapy utilization estimate for each cancer site and the overall utilization rate for all cancers. Table 9.3 summarizes the results for each of the cancers studied and
represents the cohort eligible for radiotherapy, at least once during their illness, as a proportion
of all cancer patients based on Australian data. Overall, 52.3 per cent of all cancer patients should
ideally receive radiotherapy at least once during the course of their illness based on the best available evidence. The optimal radiotherapy utilization rates vary from a low rate of zero for liver
cancer patients to a high of 92 per cent for central nervous system tumour patients [1425].
The individual branches that represented the greatest proportion of cancer patients receiving
radiation were early breast cancer treated by breast conserving surgery and post-operative
radiotherapy (8 per cent of all cancer diagnoses), pre- or post-operative radiotherapy for T3-4 or
N2-3 rectal cancer (1 per cent), early prostate cancer (2 per cent) and metastatic prostate cancer
(2 per cent). In addition, there were many branches that ended in radiotherapy being recommended for symptom control for non-small cell lung cancer (36 per cent).
Robustness of demand modelling

The robustness of models should be tested to examine the assumptions on which the model is
based and to test the sensitivity of the model to changes in uncertain variables. We have used both
sensitivity analysis and peer review to examine the robustness of the model.
Locoregional recurrence
RT
(1=yes, 0=no)
Total
proportion
1.00
0.06
1.00
0.00
1.00
0.01
0.00
0.02
0.00
0.13
1.00
0.06
1.00
0.40
1.00
0.24
1.00
0.01
1.00
0.02
0.00
0.05
0.27
Brain metastases
Resection performed with clear margins
0.32
0.80
0.10
Distant recurrence
Painful bone metastases
0.40
0.18
No locoregional recurrence
Proceed to surgery
0.73
0.46
0.41
No brain metastases
0.90
0.07
0.33
0.33
No painful bone metastases
0.67
No distant recurrence
0.82
TxNxM0
0.78
No resection performed/margins not clear
0.68
0.20
No surgery
Oesophagus cancer
0.59
Symptomatic locoregional disease
0.75
TxNxM1
Brain metastases
0.85
0.32
0.10
No symptomatic locoregional disease
Painful bone metastases
0.40
0.25
No brain metastases
0.90
0.33
0.33
No painful bone metastases
0.67
Fig. 9.2 Radiotherapy utilization tree for oesophageal cancer.Total proportion of patients needing radiotherapy is the total of the figures on the right
relating to RT yes, coded 1.00; = 0.06 + 0.01 + 0.06 + 0.40 + 0.24 + 0.01 + 0.02 = 0.80.
Source: Delaney et al. [14], by permission.
0.80
173
174
Table 9.3 The overall optimal radiotherapy utilization rate by cancer type (Australian data)
Tumour type
Proportion of all
cancers (%)
Proportion of each
cancer with an
indication for
radiotherapy (%)
Sensitivity
Analysis (%)
Proportion of all
cancers with an
indication for
radiotherapy (%)
10.8
Breast
13
83
82.9585.25
Lung
10
76
7376
7.6
Melanoma
11
23
1729
2.5
Prostate
12
60
5567
7.2
Gynaecological
35
3239
1.8
Colon
14
423
1.3
Rectum
65
NA*
3.3
Head and Neck
74
7381
3.0
Gall Bladder
13
121
0.1
Liver
0.0
Oesophageal
80
7381
0.8
Stomach
68
5868
1.4
Pancreas
57
5057
1.1
Lymphoma
65
6566
2.6
Leukaemia
44.6
0.1
Myeloma
38
NA*
0.4
CNS
92
91.692.8
1.8
Renal
28
2535
0.8
Bladder
58
44.558.3
1.7
Testis
49
49.349.5
0.5
Thyroid
10
NA*
0.1
Unknown Primary
61
5370
2.4
Other
50
0100
1.0
Total
100
51.653.1
52.3
*NA Sensitivity Analysis was not conducted because there was no significant variation in the data.
Sensitivity analysis
Sensitivity analysis examines a range of realistic scenarios to estimate the effect of uncertainties on
the results of utilization tree models. The uncertainties in a model may be due to variation in
published estimates of the proportions of patients with particular attributes, different probabilities of benefit from treatment, which could be suggested by different data sources, or variations in
the recommendations for the use of a treatment in different evidence-based guidelines because of
a lack of evidence for one treatment approach or another.
One-way sensitivity analysis tests the effect of each uncertain variable on the final optimal
treatment utilization rate. For the optimal radiotherapy utilization estimate of 52.3 per cent,
analysis of the one-way sensitivity revealed that the estimate could vary between 51.6 per cent
and 53.1 per cent, depending upon the data used in the calculation.
Monte Carlo simulations allow for assessments of uncertain data and their effect on the overall
radiotherapy utilization rate in a multivariate fashion as opposed to the univariate method
described earlier. Monte Carlo simulations are based upon the random sampling of variables
from discrete and continuous distributions during individual trials. Observing the statistical
properties of many trials using random sampled values allows additional insight into the performance of a model. A detailed description of the Monte Carlo analysis in this study is available
[21]. The Monte Carlo analysis performed in this study involved 10,000 simulations. The number
of simulations chosen was arbitrary but should be high to improve the power of the estimate. The
result was an optimal radiotherapy utilization rate of 52.3 per cent (95 per cent confidence limits:
51.7 per cent, 53.1 per cent) [26]. The tightness of the confidence intervals demonstrates that the
overall estimate is robust.
The final estimate is remarkably precise despite uncertainty in data when multiple sources
of equal quality differed, uncertainty in some indications for radiotherapy, and uncertainty
between treatment options of approximately equal efficacy such as radiotherapy, surgery, or
watchful waiting for early prostate cancer. These tight confidence intervals may be explained by
the fact that the overall estimate is most affected by attributes on the initial branches of the trees
that affect many subsequent branches. Good quality data existed for the initial branches of the
tree such as the type and stage of tumours which are collected by some population-based cancer
registries. Most of the uncertainty existed in the distal branches of the tree and hence affected very
small proportions of the cancer population and contributed very little to the overall estimate. In
addition, the effect of these variations was such that some would increase the overall utilization
rate while others would reduce it, so that to a large extent they would cancel each other.
External review
The results of this project had to be credible to all parties who may be affected by it, including,
in Australia, State and Commonwealth governments, consumers, non-government organizations
such as State cancer councils, and medical, surgical and radiation oncologists. To ensure that the
project outcomes met expectations of rigour and that points of interpretation were resolved, an
expert steering group was appointed. The steering group was convened by the Australian National
Cancer Control Initiative (NCCI), with representation from major cancer organizations, consumers, epidemiologists, radiation and medical oncologists, surgeons, palliative care specialists,
and experts in evidence and treatment guidelines, and was chaired by the Director of the NCCI.
The steering group met with the investigators on a regular basis to review project scope, methodology, and results.
It was recognized that the indications for radiotherapy and the radiotherapy utilization trees for
each cancer type and tumour site should be peer-reviewed. The draft results were scrutinized
through a process of consultation prior to final adoption of the model. A Court of Reviewers was
established comprised of experts drawn from the fields of surgical oncology, medical oncology,
radiation oncology, palliative medicine, public health, and oncology nursing. Representatives of
the guideline committees that were responsible for the existing Australian treatment guidelines
were also invited to act as reviewers.
We collated 271 specific reviewer comments related to the review. This resulted in 139 changes
to the text, trees, epidemiological data, or evidence cited. The review also resulted in major reconstructions of the radiotherapy utilization trees for two tumour sites.
175
176
Limitations of the model

Some limitations of this approach have been identified:
Quality of epidemiological data

The construction of these trees with so many branches required significant epidemiologic data to
be available in order to accurately estimate the proportions of patients with particular attributes.
Some data such as stage distributions were relatively easily obtained from central cancer registries
but other attributes that have been poorly studied included performance status, and proportions
of patients with specific symptoms that may warrant palliative radiotherapy and the proportion
with relapse.
In some cases we have had to rely on less robust data or based our model on assumptions.
We have dealt with this uncertainty by performing modelling and sensitivity analysis to assess
the relative effect that any of these uncertainties might have on the overall utilization rate.
Indications for treatment outside the scope of the study

Most planning groups use the statutory cancer registry notifications as the basis for estimating
workload. Notifiable cancers are cancers for which statutory requirements exist to notify a State
cancer registry. Statutory notification in Australia excludes non-melanoma skin cancers and
benign tumours but includes ductal carcinoma in situ of the breast. However, there are indications for radiotherapy for some non-notifiable conditions such as benign tumours and other
non-malignant conditions that are not included in these model-based estimates. These other
conditions will need consideration when planning radiotherapy resources.
Radiotherapy has an established role for many non-melanoma skin cancers and this represents
a moderate workload in most radiation oncology facilities, particularly in Australia where the
incidence of non-melanoma skin cancers is relatively high compared with other countries [27].
In addition to the treatment of the primary disease, metastatic non-melanoma skin cancers are
frequently treated with radiotherapy for nodal metastases. Radiotherapy also has an established
role in the management of some benign tumours and non-cancerous conditions. These conditions include benign brain and parotid tumours, keloid, pituitary tumours, pterygia, heterotopic
ossification, desmoid tumours, and exophthalmos from Graves disease [28].
The overall demand for radiotherapy resources for these conditions is difficult to estimate as
the incidence of these conditions is not reported and evidence-based treatment guidelines do not
exist for most of non-malignant conditions. Alternative treatment options also exist.
It remains important to consider this additional workload in resource planning. Radiotherapy
for benign disease and advanced non-melanoma skin cancers often require complex external
beam radiotherapy and may add significantly to the radiotherapy resources required. In the
absence of data, other methods can be used to estimate the workload. We found the best way was
by assessing available data on current workloads in some Australian departments as a reflection
of more widespread demand. Data from more than 40,000 patients treated over 10 years in two
large Australian departments showed that 10 per cent of patients received radiotherapy for
non-notifiable conditions [29].
Only external beam radiotherapy was considered

Inclusion of other forms of radiotherapy with radio-isotopes such as brachytherapy was beyond
the scope of this original model as it was designed for external beam resource planning. However
these other forms of radiotherapy should be considered when planning radiotherapy resources,
and we describe results for brachytherapy below.
APPLICATION TO RADIOTHERAPY SERVICE PLANNING
Controversies in the recommendations for radiotherapy

Despite using evidence-based treatment guidelines to determine indications for radiotherapy,
there are areas where the role of radiotherapy remains poorly defined or where the indications
for the use of radiotherapy remain vague. This is mainly due to poor evidence and the lack of
good quality trials. The model is easily amended should new evidence for or against the use of
radiotherapy for a specific clinical situation emerge.
The effect of patient choice considerations

We did not consider the effect of patient choice because of the risk that the studies reporting
patient preference may have been confounded by the availability of radiotherapy to the study
population. Very few patient choice studies provide information about whether resource
constraints and displacement from home for patients were part of the discussion and decisionmaking process. It has been shown, for example, that Australian mastectomy rates increase in
areas of radiotherapy remoteness [9].
Some of the studies do not discuss the context or framing of information presented to patients.
In situations where descriptions of context were provided, the studies were usually hypothetical
in that the subjects were not cancer patients or their treatment had been already determined
(which may mean that they may have been influenced by discussion prior to the study). Patient
choice studies do not address all of the patient choice issues for all radiotherapy situations. Due
to these limitations, it was felt appropriate to not incorporate patient choice into the trees. This
has the limitation that patients always have a choice in the treatment they receive and some will
decline treatment even when it is strongly recommended. As this proportion cannot be obtained
reliably it was felt best to omit it completely.
Rare indications for radiotherapy have not been included in

the overall estimate
The methodology of this study involved studying indications for radiotherapy that would affect
the overall radiotherapy utilization rate. However, data for some indications for radiotherapy
were lacking or the proportion of cases is likely to be exceedingly small. Although only of small
overall impact in their own right, the cumulative total of these indications might increase the
overall radiotherapy utilization estimate by 1 to 2 per cent. Sufficient epidemiological data on the
incidence of these metastatic manifestations do not exist to calculate a more accurate figure.
Application to radiotherapy service planning

The model of radiotherapy utilization may be used to plan new treatment services and to examine
the adequacy of existing services.
Population-based radiotherapy service planning

This study estimated that the optimal radiotherapy utilization rate was 52 per cent using an evidence-based approach. The number of new cases of cancer may be obtained from a central cancer
registry and hence the number of new cases with an indication for radiotherapy may be calculated
from our benchmark. If the throughputs of megavoltage radiotherapy machines are known and
workload capacities are also known then it is possible to calculate the number and distribution of
staff and megavoltage radiotherapy equipment for benchmarking existing services or planning
service expansion.
A number of Australian and international agencies have used the radiotherapy benchmark
for planning radiotherapy resources. These include Victoria [29] and NSW [30] in Australia,
177
178
and Scotland [31]. The International Atomic Energy Agency has also used the benchmark for
estimating radiotherapy demand and service shortfall in low and middle income countries.
Some international planning and research groups have used the model described here to
plan radiotherapy services. For example, Bentzen et al. [32] published an extensive review of the
radiotherapy resource requirements in 25 countries in the European Union by using the model to
calculate the current shortfall in radiotherapy resources. In only four European countries were
radiotherapy resources sufficient to meet 80 per cent or more of demand. It was estimated that
the required linear accelerators for each EU country ranged from 4 per million population
(Cyprus) to 8 per million (Hungary) with an average of 5.9 linear accelerators per million to
achieve the optimal radiotherapy utilization rate. The range was due to the wide variation in the
crude incidence of various cancers because of differences in risk factors and the age structure of
the population. For example, in 2002 the crude incidence of lung cancer in males varied from 41
cases per 100,000 in Moldova to 130 cases per 100,000 in Belgium [33].
Shortfalls between optimal and actual rates of

radiotherapy utilization
The radiotherapy utilization trees that have been developed for each of the tumour sites are
diagrammatic representations of optimal evidence-based cancer care from a radiotherapy
perspective. They can be compared to actual radiotherapy utilization reported in patterns of
care studies. Further details can be ascertained by analysing the distributions of tumour stage,
histology, age, performance status, and other factors, in order to better define areas of discrepancy between the actual and ideal utilization rates.
Table 9.4 compares optimal radiotherapy utilization rates with available rates of actual
radiotherapy utilization obtained from population-based data for each tumour site. The table
highlights the paucity of the data on actual radiotherapy utilization, the high variability of the
actual radiotherapy rates across different regions, and the general shortfall in radiotherapy use for
most major tumour sites including the common tumour sites that have well-known evidencebased treatment guidelines such as breast cancer. These data are not subdivided by the various
stages or other clinical attributes that would make a direct comparison between the optimal trees
and the actual practice, although each of the tumour-site publications has detailed information
by tumour stage [1425].
Modelling changes in cancer incidence by type of cancer,

tumour stage distribution, and treatment guidelines
One criticism of the model may be that the model will become out of date when new recommendations for treatment are made or when incidence or stage distributions change. However, one of
the strengths of the model is that the trees are easily adapted when new information about cancer
treatment comes to hand. Because new treatments will often only affect one branch in the overall
utilization tree, the overall effect of any change is likely to be small and the estimate derived from
this model is likely to remain valid for many years.
The software used to construct the radiotherapy trees can be readily used to change the overall
model should there be changes in the incidence of certain cancers, a change in the stage distribution or a change in therapy recommendations based on clinical trials or revised clinical guidelines.
For example, a change in stage distribution of cancer due to the development of superior staging
investigations (such as the impact that positron emission tomography has had on non-small cell
lung cancer staging or the impact that a new screening tool makes to stage distribution of
Table 9.4 Comparison of optimal and actual radiotherapy utilization rates for various geographical regions
Cancer site
Breast cancer
Lung cancer
Melanoma
Prostate
Kidney
Urinary Bladder
Testis
Stomach
Pancreas
Liver
Gall Bladder
Colon
83
76
23
60
27
58
49
80
68
57
0
13
14
81
71
23
51
63
17
48
73
7
6
9
6
UK (%) 1999 Australia (%)

(NYCRIS)7
National 1995
NSW8 2000 VIC9
SA1,10 19901994
43.60
54
41
71
24
39.8
35.52
NR4
NR4
49
44
37.6
1.13
NR4
NR4
13
NR4
1.8
41.02
16
NR4
NR4
NR4
43.6
3.64
NR4
NR4
NR4
NR4
11.0
4.30
3.47
NR4
NR4
NR4
NR4
25.7
39.79
NR4
NR4
NR4
NR4
NR4
42.9
54.33
NR4
31
NR4
NR4
NR4
47.1
15.36
NR4
NR4
NR4
NR4
6.0
15.70
NR4
NR4
NR4
NR4
3.9
3.48
NR4
NR4
NR4
NR4
NR4
2.6
13.51
NR4
NR4
NR4
NR4
4.7
NR4
NR4
3.3
NR4
16.5
42.40
39.35
1.87
26.80
7.82
2.00
0.66
61
56
37.59
41.20
33
38
NR4
Oral Cavity
74
943
NR4
NR4
NR4
NR4
NR4
NR4
44.32
Lip
20
22
7.63
NR4
NR4
NR4
NR4
NR4
2.0
74.53
NR4
NR4
NR4
NR4
NR4
80.4
70.41
NR4
NR4
NR4
NR4
NR4
NR4
Rectum
Larynx
Oropharynx
100
100
100
100
(Continued)
APPLICATION TO RADIOTHERAPY SERVICE PLANNING
Oesophagus
Optimal Radiotherapy Actual radiotherapy utilization rates

utilization rate (%)
Sweden (%)
USA (%)
2001
SEER6 19952000 ACS1,5 2001
179
180
Cancersite
OptimalRadiotherapy Actual Radiotherapy Utilization Rates

utilization rate (%)
Sweden (%)
USA (%)
2001
SEER 19952000
ACS1 2001
UK (%) 1999 Australia (%)

(NYCRIS)7
National 1995
NSW8 2000 VIC9
SA1,10 19901994
NR4
NR4
NR4
NR4
NR4
NR4
Paranasal sinuses
100
100
NR4
Nasopharynx
100
100
84.02
NR4
NR4
NR4
NR4
NR4
NR4
Unk.prim (H+N)
90
NR4
NR4
NR4
NR4
NR4
NR4
NR4
NR4
Uterus
46
64
21.85
25.25
NR4
NR4
NR4
NR4
25.7
43.84
32.88
NR4
NR4
NR4
NR4
40.9
37
59.03
NR4
NR4
NR4
NR4
NR4
51.9
40
NR4
NR4
NR4
NR4
NR4
NR4
23.5
NR4
NR4
NR4
NR4
NR4
NR4
5.6
82
NR4
NR4
NR4
NR4
NR4
NR4
33.8
Cervix
58
CNS
92
Lymphoma
65
Leukaemia
Myeloma
1First
38
treatment only
2includes
salivary glands
3includes
brachytherapy
4NR
83
Not reported
5ACS
American College of Surgeons
6SEER
Surveillance, Epidemiology and End Results database (National Cancer Institute)
7NYCRIS
8NSW
Northern and Yorkshire Cancer Registry and Information Service
the state of New South Wales
9VIC
the state of Victoria
10SA
the state of South Australia
Table 9.4 (Continued) Comparison of optimal and actual radiotherapy utilization rates for various geographical regions
OTHER USES FOR THE OPTIMAL TREATMENT MODEL
a particular cancer), could easily be incorporated into the model provided that the new proportions of a particular attribute are known.
Other uses for the optimal treatment model

Optimum utilization for other treatments
The method described earlier is easily adaptable to other services, provided that evidence-based
treatment recommendations are available. In Australia, the Collaboration for Cancer Outcomes
Research and Evaluation (CCORE) has developed models for optimal referrals for genetic
cancer risk assessment [34], chemotherapy delivery [35] and brachytherapy [36]. In addition,
we have developed models of care for specific groups of patients such as screen-detected breast
cancer patients [37] for surgery, radiation, chemotherapy, and hormone therapy for a defined
sub-population.
Estimating optimal treatment for different populations

The data used represents an Australian population of cancer patients and the distribution of
different types and stages of cancer are likely to be similar for other industrialized nations. Low
or middle income countries have very different distributions of tumour types and stages due
to differences in risk factors, access to screening, and lower median survival for the population.
The model can be easily adapted to incorporate these differences in distribution of cancers as the
recommendations for radiation remain the same. This is done by varying the proportions
that appear in the tree. This has been done for low-middle income countries [38]. For example,
the distribution of different types of cancers varies between the five broad regions of Africa [33];
cervix cancer is less common in North Africa and bladder cancer is more common than in other
parts of Africa. These changes affect the optimum radiotherapy utilization rate so that the average
rate for Africa (55 per cent) is higher than in Australia and has a wide range from 47 per cent in
Middle Africa to 61 per cent in North Africa.
Estimating other end-points

The models described above, calculated proportions of a group that might receive treatment. The
models can also be adapted to calculate other endpoints. These include using the models
to calculate survival benefit or the average number of fractions of radiotherapy for each
tumour type.
The number of daily radiotherapy treatments (fractions) varies with the tumour type and treatment intention from one fraction for palliation of bone pain to over 35 fractions for the curative
treatment of prostate cancer. Thus the contribution of each indication to the demand for radiotherapy varies. In countries where the number of treatment fractions affects reimbursement there
is evidence that higher numbers of fractions are used per course [39]. The average number of
fractions per course of radiotherapy varies between radiotherapy departments. In NSW in 2004
the average number of fractions varied by 47 per cent from 15.7 to 23.1 [40]. By making the
number of fractions the pay-off in the radiotherapy decision trees it is possible to determine the
effect on demand for radiotherapy and to set a benchmark for appropriate fractionation. When
there are several fractionation regimens for the same indication that have a similar effect on outcome it is possible to perform a sensitivity analysis to determine the effect of the variation.
By using survival benefit as the pay-off in the decision tree it is possible to calculate the overall
survival benefit for an intervention. We have examined the survival benefit from radiotherapy
for breast cancer [41]. Radiotherapy improved local control of breast cancer by 11 per cent and
overall survival by 3 per cent.
181
182
Modelling optimal re-treatment rates

The models described in the earlier section only apply to the single use of a particular treatment.
This is depicted in the trees as the terminal branch of the tree once a recommendation for treatment has been reached. One limitation is that there are many instances where patients undergo
multiple courses of radiotherapy or chemotherapy due to recurrent or persistent disease. The
proportion of patients that require greater than one treatment course needs to be incorporated
into models of demand in order to plan treatment services.
It is estimated from actual practice that radiotherapy re-treatment represents up to 25 per cent
of courses of radiotherapy [42]. Re-treatment assessment requires a different modelling process
as the terminal branches need to be replaced by the possibility that the patient might re-enter
the system. Once a patient has completed treatment they might then become disease free,
relapse requiring further treatment, or die and these scenarios could occur after each episode
of recurrence. The type of analysis that allows for this re-entry of the patient into a state that
warrants further treatment is called Markov modelling or state transition.
Preliminary investigations of re-treatment by radiotherapy for lung cancer [43] showed 27 per
cent of patients received two courses of radiotherapy, seven per cent received three courses and
two per cent received a fourth course of radiotherapy. Because patients receiving two or more
treatments were having palliative treatment for recurrence, re-treatment only accounted for
17 per cent of the number of fractions given for lung cancer.
Summary
It is possible to develop robust models of cancer service treatment from evidence-based guidelines and cancer incidence data. The proportion of cancer cases with an indication for a treatment
can be calculated and proportions summed to give an overall estimate of service planning and
bench-marking. Modelling deals with uncertainties by sensitivity analysis. Extensive peer review
ensures that the indications are acceptable to oncology specialists and the study results are widely
disseminated. Once a model is created it can be easily adapted if new information becomes
available. Changes to one indication are unlikely to affect the overall estimate because each
indication only affects a small proportion of cases. The model may also be used to examine
complex endpoints such as survival, local control, and service use.
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mammography-screened breast cancer population based on a review of evidence-based clinical
guidelines. Cancer, 112:191222.
38 Barton MB, Frommer M, & Shafiq J (2006). Role of radiotherapy in cancer control in low-income
and middle-income countries. Lancet Oncol, 7:58495.
39. Lievens Y, Kesteloot K, Rijnders A, Kutcher G, & van den BW (2000). Differences in palliative
radiotherapy for bone metastases within Western European countries. Radiother Oncol, 56:297303.
40. Statewide Services Development Branch (2006). 2004 Radiotherapy Management Information System
Report. NSW Health, Sydney.
41 Shafiq J, Delaney G, & Barton M (2007). An evidence-based estimation of local control and survival
benefit of radiotherapy for breast cancer. Radiother Oncol, 84:1117.
42 Statewide Services Development Branch (2007). 2006 Radiotherapy Management Information System
Report. NSW Health, Sydney.
43 Estall V, Barton M, Vinod SK, & Liu Z (2007). Patterns of radiotherapy re-treatment in lung cancer
patients: a retrospective, longitudinal study. Journal of Thoracic Oncology, 2:5316.
Chapter 10
Managing the costs of new therapies:

the challenge of funding new drugs
Susan E. OReilly, Jaya Venkatesh1
The opportunities and the challenges

In developed nations, the growth in the number and variety of effective new cancer drugs, which
improve cure rates, prolong life or improve quality of life for patients with cancer, has been one
of the most exciting developments in modern medicine. Simultaneously, in many countries,
the early twenty-first century is also the era of the aging baby boom generation, born just after
the Second World War. These population demographics will impose greater demands on the
health care system over the next 25 years, as this group enters the highest risk age group for new
cancer diagnoses. The collision of demographics and new technology (drugs) will force us to set
priorities for investment in cancer care.
Until 10 to 20 years ago, progress in drug treatment of cancer had yielded slow but steady
improvements, which typically emerged from the systematic approach, through clinical trials,
to evaluate drugs and combinations of drugs in advanced disease. Where clinical benefit was
evident, the promising treatments were then studied in newly diagnosed patients in the curative
setting. Over time, chemotherapy drugs, which have broad cytotoxic or cytostatic effects on
cancer cells, were shown to be dramatically effective in the curative treatment of childhood
leukaemia, adult germ cell tumours of the testis and ovary, choriocarcinomas, Hodgkins disease,
and several subtypes of lymphoma. Substantial improvements were evident in failure-free and
overall survival in women with breast cancer treated with anti-oestrogen hormones such as
tamoxifen (the first of the targeted therapies specific to hormonally sensitive cancers) and/or
chemotherapy after surgery [1,2]. Other common cancers now benefit from adjuvant (curative)
drug therapy at the time of initial surgery or radiation; e.g. oxaliplatin-based chemotherapy
for Stage 3 colon cancer [36]. or hormones for high risk prostate cancer [7]. Incremental
benefits in either disease control or survival have continued to be achieved in common advanced,
incurable cancers, such as chemotherapy with bevacizumab (Avastin) in colon cancer [811],
pegylated liposomal doxorubicin (Caelyx) in ovary [1214], and erlotinib (Tarceva) in lung
cancer [15].
Although new chemotherapy drugs, alone or in combinations and with various schedules,
remain an area of active research, the late 1990s and the first part of the twenty-first century
have seen rapid growth in the understanding of the science of cancer development, growth and
Susan E. OReilly, MB, FRCPC, Vice-President, Cancer Care, BC Cancer Agency, Vancouver, British
Columbia, Canada, and Jaya Venkatesh, MHA, CMA, Director, Business Strategy and Operations,
Provincial Systemic Therapy Programme, British Columbia Cancer Agency, Vancouver, BC, Canada.
186
MANAGING THE COSTS OF NEW THERAPIES: THE CHALLENGE OF FUNDING NEW DRUGS
metastatic behaviour. New laboratory techniques to determine molecular pathways in normal

and cancer cells, the identification of inherited or acquired genetic mutations and their detection
in cancer tissues, and the discovery of new biomarkers of disease prognosis or predictive
behaviour in response to drugs, have all led to a multibillion dollar explosion of research and
development in cancer drugs. Academic research organizations, especially universities, small
biotechnology companies, and big multinational pharmaceutical companies are all in the race to
discover and develop marketable therapies for cancer.
Nevertheless, to date only a handful of new drugs have proven to be breakthroughs in cancer
care. Good examples of successful targeted therapies are: imatinib (Gleevec) for chronic
myeloid leukaemia [1618] and other Philadelphia chromosome positive leukaemias and c-kit
positive tumours such as gastrointestinal sarcoma [19,20], trastuzumab (Herceptin) [2125]
which targets the growth factor Her-2/neu in breast cancer and has demonstrated remarkable
improvements in relapse-free survival in conjunction with chemotherapy after surgery, and
a significant improvement in overall survival in the metastatic setting; erlotinib [15], (Tarceva),
an epidermal growth factor inhibitor in lung cancer, which prolongs survival in advanced disease;
bevacizumab [811]; (Avastin), an anti-angiogenesis drug, which reduces blood vessel growth
and tumour nutrition and improves survival in metastatic colon cancer; and sunitinib [26]
(Sutent) and sorafenib [27]; (Nexavar), tyrosine kinase inhibitors which prolong life in
advanced renal cancer.
Despite the enormous scientific efforts underway, the course from discovery of a potentially
effective cancer drug to its licensing for sale by national regulatory bodies such as the Food
and Drug Authority (FDA) in the United States (http://www.fda.gov/) or, in Canada, the Health
Canada Therapeutic Products Directorate (TPD) and Bureau of Biologicals (BB) (http://www.
hc-sc.gc.ca/ahc-asc/branch-dirgen/hpfb-dgpsa/tpd-dpt/index-eng.php) is necessarily slow and
very costly. Typically, once in vitro and animal efficacy and toxicity studies are completed, drugs
progress through a progression of clinical trials in humans, involving Phase 1 trials of dosing and
toxicity assessment, Phase 2 studies of efficacy in specific cancers, then Phase 3 randomized trials
to compare patient outcomes with current best practices, in both the advanced disease setting,
then subsequently in earlier, curative stages of cancer. Drug companies claim that they invest
between 50 and 130 million US dollars to get one drug to market. The success rate for licensing a
drug which enters clinical testing is estimated to be no more than 1 in 10, thus in the winner takes
all world of the Big Pharma companies, potentially $500 million to $1.3 billion may have been
invested overall, to see one successful product come to market. Pharmaceutical companies claim
that they need to charge extraordinarily high prices for these new drugs during the years of patent
protection, to defray their investment costs, reinvest in ongoing research and marketing, and
reward their investors.
Health care providers, governments, and patients often exhibit healthy scepticism regarding
drug pricing. The publicly funded health care systems and even insurance-company funded and
managed care private systems in the United States creak under the strain of supporting the
continuously escalating costs of overall health care, and, in particular, the skyrocketing costs of
new drugs. It is highly probable that markets are approaching the limits of tolerance and affordability of the rate of growth in costs of new drugs. It is likely that there will be a more balanced
approach to setting drug prices, particularly in the United States. Progress in pathology, which
will limit the use of drugs to the subsets of patients most likely to derive benefit, will help limit the
use of some drugs to patients with cancers exhibiting specific molecular and genetic profiles. This,
in turn, will prove challenging for the drug development industry, as their risks are then proportionally higher, and returns lower. It remains to be seen whether this may adversely affect the
tempo of drug discovery in the developed world.
ONCOLOGY DRUG COVERAGE IN CANADA
The scale of the problem

Even in the worlds wealthiest nation, the United States, concerns about the affordability and cost
of drugs are finally being openly discussed by oncologists, health care providers, and the media.
In the Sunday New York Times, July 6, 2008, the rising cost of cancer drugs and the conflicting
evidence of efficacy from a variety of differing clinical trials was front page news; in particular,
they quoted data from IMS Health, a health care information company, showing that cancer
drugs constitute the second biggest category of drugs, behind cholesterol lowering drugs
(for patients at risk of heart attacks and strokes), and accounted for $17.8 billion of the total
prescription drug sales of $286.5 billion in the United States in 2007. Spending on drugs for
cancer grew 14 per cent in the United States that year, but nevertheless, cancer was only fourth
in the rate of growth in drug costs in relationship to other diseases.
Is cancer care consuming too much or too little of resources in the desire for better outcomes?
Little comparative information is readily available on the costs of prevention, screening,
diagnosis, and care across a spectrum of illnesses and disabilities, so it is challenging to attempt to
benchmark against other diseases, such as cardiovascular, neurological, arthritic, or diabetic
chronic diseases. Likewise, it is even more difficult, but relevant, to compare to the needs for
governments to invest in other social services, education, and infrastructure, external to health.
The United States is a difficult model to analyse, as health care is funded by a smorgasbord of
government funded Medicare, Medicaid, and Veterans programmes for the elderly, poor, or
former military. Forty-five million people have no private health insurance, and the majority that
do have a spectrum of coverage from limited and carefully managed coverage to more generous
programmes. A health policy report by Dr. Peter Bach [28] describes the limits in Medicares
ability to control rising spending on cancer drugs. Complex legislation and regulations in the
United States compromise the ability to restrict utilization to subsets of patients where the drugs
are likely to be cost effective.
Oncology drug coverage in Canada

The Canadian health care system is predominantly publicly funded, and has many features
relevant to other countries, and so we will discuss it in more detail. Each of the ten provinces and
two territories funds and has governance over health care for its own population, but is expected
to comply with the tenets of the Canada Health Act, which mandates that medically necessary
care in a hospital setting is provided free of charge to the patients. Consequently, well organized
provincial cancer agencies in most provinces fund all inpatient drug therapy, after suitable, but
somewhat variable, reviews of benefits and costs. Oral drugs, or injectable hormones, such as
LHRH (luteinizing hormone-releasing hormone) agonists for prostate cancer, may be funded
either by provincial cancer agencies and dispensed through hospital pharmacies (as happens in
British Columbia, Alberta, and Saskatchewan), or, in all other provinces, funded through provincial drug benefit plans which partially reimburse the cost of approved drugs dispensed through
retail pharmacies. Consequently, formulary listing of individual drugs and financial coverage
varies among provinces.
Both British Columbia and Ontario have well developed formal processes of technology review
and economic evaluation for new drugs and for extended indications of existing drugs. In 2008
and 2009, all but one province (Quebec) have been collaborating in the development of a
proposed Joint Oncology Drug Review, which may ultimately serve the needs of all provincial
funding agencies. In the interim, the Ontario oncology drug preview processes, which are designed
to advise their provincial government about both hospital and drug benefit plan listings,
have been studied as a potential model for a national process. All participating provinces have
187
188
observer status and receive copies of confidential drug company submissions and of preliminary
and final Ontario recommendations. Nevertheless, all provinces then make their own internal
decisions about funding priorities for cancer drugs.
British Columbia, Canada An example of a comprehensive

cancer drug system
It is helpful to gain an understanding of the growth in utilization and costs of cancer drugs by
examining comprehensive data for a clearly defined population, such as British Columbia (BC).
We can then extrapolate from this model to estimate the growth in costs and utilization throughout Canada and first world markets. Next, we can examine strategies in BC, Ontario, and elsewhere in the world for technology and economic review, before engaging in discussion of broader
strategies to mitigate rising costs without major compromises in clinical efficacy.
In British Columbia, the westernmost province in Canada, the total population is 4.5 million,
spread over an area equivalent to the size of France and Germany together, although most
of the population is concentrated in the south, close to the border with the United States. The
BC provincial Ministry of Health is responsible for the provision of free access to family doctors
and to hospital care for all residents. It also operates a drug benefit plan (Pharmacare) which
provides coverage for all outpatient drugs (subject to income-linked deductibles) except cancer
drugs.
The British Columbia Cancer Agency (BCCA), a member organization of the BC Provincial
Health Services Authority, has the mandate for cancer control in the province, and receives its
funding from the provincial Ministry of Health. The BCCA manages and funds, from this public
purse, all intravenous cancer drugs, administered in ambulatory clinics or inpatient services in
cancer clinics and hospitals, and all oral, intramuscular, or subcutaneous cancer drugs required
by patients in the province. Consequently, the BCCA is a monopoly provider for all publicly
funded active cancer therapy, inclusive of chemotherapy, hormone therapy, immunotherapy,
and targeted molecular drugs (in the same way, the BCCA is the only provider of radiotherapy
services; but it has no monopoly on surgical services). All cancer patients in the province, regardless of whether they are seen at one of the five BCCA cancer centres or one of the 30 BCCA community cancer clinics, or have their medications prescribed by BCCA oncologists, community
oncologists, surgeons or family doctors, are registered with the BCCA with demographic and
diagnosis data, and are able to access free coverage of cancer drugs as long as these are given
according to the more than 300 evidence-based guidelines and protocols published on the BCCA
website www.bccancer.bc.ca. All demographics, drugs, doses, and dates are captured on an
oncology drug data system, and data are available for analysis for utilization, monitoring for
compliance with guidelines, and analysis of clinical outcomes.
Thus, the comprehensive BCCA cancer drug management system is a very powerful system in
which we can examine oncology drug utilization and growth in a defined provincial population,
where access to funded cancer drugs is managed by a single payer (the BC Cancer Agency)
and provided free of charge to cancer patients. Drug utilization trends, financial management,
communications, education, and compliance management strategies can be evaluated and
extrapolated to larger national or international populations.
The BCCA oncology drug budget in fiscal 200809 was 130,000,000 Canadian dollars, which
provides drug coverage for approximately 30,000 unique patients for their cancers (defining
a unique patient as a patient counted only once in a year, even if they have multiple treatments).
Figure 10.1 shows that the annual drug budget for this province of 4.5 million increased by over
6 times in the last 11 years, an annual increase of about 20 per cent per year.
BRITISH COLUMBIA, CANADA AN EXAMPLE OF A COMPREHENSIVE CANCER DRUG SYSTEM
140,000
120,000
In 000s (Cdn$)
100,000
80,000
60,000
40,000
20,000
0
000s (Cdn $)
% Growth
98/99
99/00
00/01
01/02
02/03
03/04
04/05
05/06
06/07
07/08
08/09
20,704
23,333
33,492
49,565
57,263
62,061
74,218
90,560
100,032
114,032
130,032
25
13
44
48
16
20
22
10
14
14
Fig. 10.1 Oncology drug budget in British Columbia per annum, and growth compared to the
previous fiscal year.
Figure 10.2 shows the growth in numbers of unique patients per year receiving cancer drugs
in recent years, averaging 6.2 per cent per year since 199899. Future numbers are based on
a conservative extrapolation at 4 per cent per year, predicting 46,500 unique patients by 201819,
that is, a 50 per cent over the next 10 years. The growth in the numbers of patients on active
therapy is a significant component of the increasing drug budget.
Notably, the growth in the incidence of cancer in the population is approximately 2.5 per cent
per year (due mainly to population growth and ageing rather than to increases in incidence rates),
but the prevalence of patients on active cancer therapy has grown at double or treble this rate.
Why is growth greater in numbers of patients on active therapy than in incidence? There are
several reasons:
1 Some of the curative adjuvant regimens now last for many years (e.g. up to ten years for
adjuvant breast cancer hormones).
2 Advanced, incurable cancer is now becoming a well managed chronic disease. Instead
of patients having a brief episode of therapy for just a few months, and then succumbing
to their disease, many are now living on active therapy for years; e.g. imatinib (Gleevec)
for chronic myeloid leukaemia, trastuzumab (Herceptin) for advanced breast cancer, and
LHRH agonists for prostate cancer.
3 Toxicity of therapy is now either better managed or less troublesome on new therapies,
so compliance with recommended treatments is better.
4 Patients are well informed and often actively seek treatments, being informed from the
plethora of information on the internet and other media.
The average cost per patient per year was $4,093 in 200809, a much more modest sum than the
burgeoning costs of new drugs might suggest; it has increased from $1,142 in 199899 (Figure 10.3).
189
35,000
30,000
Number of patients
25,000
20,000
15,000
10,000
5,000
0
# of patients
% growth
98/99
99/00
00/01
01/02
02/03
03/04
04/05
05/06
06/07
07/08
08/09
17,620
19,465
20,499
23,460
24,332
25,237
26,411
28,013
29,442
30,209
31,591
10
14
Fig. 10.2 Numbers of unique patients (i.e. counted once even if multiple treatments received in
a year) accessing publicly-funded cancer drugs in British Columbia per fiscal year.
$4,500
$4,000
$3,500
$3,000
Average cost/pt
190
$2,500
$2,000
$1,500
$1,000
$500
$0
Avg cost/pt
(Cdn $)
% growth
98/99
99/00
00/01
01/02
02/03
03/04
04/05
05/06
06/07
07/08
08/09
$1,142
$1,381
$1,831
$1,936
$2,166
$2,480
$2,759
$3,204
$3,597
$3,779
$4,093
14
21
33
12
14
11
16
12
Fig. 10.3 Average cancer drug cost in Canadian dollars per patient per year in British Columbia,
based on actual numbers of patients treated and drugs expenditure in a given year; and percentage
growth per annum compared to previous year.
2008/09 Top 10 Oncology Drug Costs

imatinib (Gleevec, Glivec)
10%
aromatase inhibitors
7%
oxaliplatin (Eloxatin)
6%
bevacizumab (Avastin)
5%
LHRH agonists
12%
docetaxel (Taxotere)
4%
octreotide (Sandostatin)
4%
trastuzumab (Herceptin)
13%
bortezomib (Velcade)
3%
rituximab (Rituxan)
14%
Other
22%
Fig. 10.4 Top 10 oncology drugs as proportions of the total 200809 oncology drug expenditure
(Can $130 Million) for the British Columbia population.
In 200809, the top ten drugs were as shown in Figure 10.4; these typically comprise 75 per cent
of the total budget.
Further data on the major types of cancer are regularly reviewed. Within each of 12 diagnostic
categories of cancer, annual drug costs are shown in Figure 10.5, being highest for breast cancer,
with lymphoma recently surpassing gastrointestinal and genito-urinary cancers. Annual numbers
of unique patients receiving chemotherapy or hormonal drugs are shown in Figure 10.6, being
highest for breast and genito-urinary cancers. Most interestingly, the average cost per patient per
year for the major diagnostic groups is shown in Figure 10.7, being highest for sarcoma, central
nervous system tumours, lymphoma, gastro-intestinal cancers, and leukaemias.
40,000
35,000
In 000s (Cdn $)
30,000
25,000
20,000
15,000
10,000
5,000
0
Breast
Central
Nervous
System
Gastrointestinal
Genitourinary
Gynecology
Head &
Neck
Leukemia &
Bone
Marrow
Lung
Lymphoma
Pediatrics
Sarcoma
Skin
600
05/06
24,576
2,726
15,377
16,037
2,155
335
9,016
3,697
16,798
883
1,414
06/07
33,415
2,938
21,392
16,603
1,570
421
10,111
4,477
18,416
454
1,622
661
07/08
31,723
3,627
18,021
17,657
1,909
535
12,399
4,981
19,949
1,623
2,762
346
08/09
32,805
3,780
24,151
19,422
2,143
947
14,691
5,914
22,219
2,247
3,583
423
Fig. 10.5 Annual oncology drug expenditure in British Columbia, thousands (Canadian dollars),
according to diagnostic categories of cancer and year from 200506 to 200809.
191
16,000
Number of unique patients
14,000
12,000
10,000
8,000
6,000
4,000
2,000
0
2005/06
2006/07
2007/08
2008/09
Breast
Central
Nervous
System
Gastrointestinal
Genitourinary
Gynecology
Head &
Neck
Leukemia &
Bone
Marrow
Lung
Lymphoma
Pediatrics
Sarcoma
Skin
11,913
12,675
12,906
13,924
468
477
466
460
2,860
2,975
2,867
3,201
6,704
6,990
7,283
7,718
1,010
1,021
973
1,048
368
387
456
514
1,308
1,306
2,019
2,350
1,601
1,516
1,341
1,501
3,186
3,249
2,758
2,825
252
182
321
356
222
222
296
243
306
296
158
127
Fig. 10.6 Numbers of unique patients (i.e. counted as one even if multiple treatments received in
a year) by tumour group according to diagnostic categories of cancer accessing publicly-funded
cancer drugs in British Columbia per fiscal year.
Oncology drug systematic review, utilization management,

and cost control in British Columbia
As a vital component of its mandate to fund cancer drugs and other new programmes and
technologies, the BCCA has conducted a Priorities and Evaluation review on an annual basis
for the last 13 years. The most frequent reviews are for new drugs, however, expanded indications
16,000
14,000
12,000
10,000
(In Cdn $)
192
8,000
6,000
4,000
2,000
0
Breast
Central
Nervous
System
Gastrointestinal
Genitourinary
Gynecology
2005/06
2,063
5,824
5,377
2,392
2,133
910
6,893
2,309
5,272
3,504
6,371
1,961
2006/07
2,636
6,160
7,190
2,375
1,538
1,088
7,742
2,953
5,668
2,496
7,305
2,232
2007/08
2,458
7,784
6,286
2,424
1,962
1,172
6,141
3,715
7,233
5,057
9,331
2,192
2008/09
2,356
8,217
7,545
2,516
2,044
1,843
6,251
3,940
7,865
6,311
14,744
3,331
Head &
Neck
Leukemia &
Bone
Marrow
Lung
Lymphoma
Pediatrics
Sarcoma
Fig. 10.7 Average publicly-funded cancer drug cost per patient by tumour group per year in
British Columbia (in Canadian Dollars).
Skin
for prevention, screening, radiation oncology, and other diagnostic or therapeutic programmes
may also be reviewed. There are 12 provincial Tumour Groups spanning the range of major
groups of cancers (e.g. breast, lung, gastrointestinal, genitourinary, lymphoma, leukaemia,
brain, sarcoma, etc). These expert provincial tumour groups comprising oncologists from all
subspecialties, pharmacists, and pathologists develop evidence-based clinical practice guidelines
for each new drug or combination of drugs, or for a new indication for an existing drug. They
then submit for each new drug or indication a formal application for drug funding to the
Priorities and Evaluation Committee of the BCCA. This committee includes an administrative
leader, oncologists from various professional disciplines, two pharmacists experienced in pharmacoeconomics and drug information, a health economist, and a statistician. All participants are
experienced in technology review methodology.
The BCCA pharmacoeconomics team prepares a pharmacoeconomic model of the drug and
delivery cost, based on a simple calculation of the cost per life year gained. This simple approach
is a surrogate for preparation of more complex Quality Adjusted Life Year costs (where some
assumptions may be difficult to quantify), but it does not take into account any additional costs
to the health care system as a consequence of the treatment or prolongation of life. The inherent
simplicity of this model, however, means that it is easy to apply in any health care system, does
not rely on complex modelling, and can be applied reasonably quickly and in a consistent way to
several potentially competing options. This is important as it is used as a practical management
tool within the annual budget cycle, and often is based on very recent clinical advances. It is primarily influenced by the high acquisition costs of new drugs. It is essential to have information,
either from published clinical trials data or from the pharmaceutical company, about the actual
median (or mean) duration and dose of therapy; otherwise, the cost per patient will be overestimated as actual amount of drug used is often less than the prescribed intended amount. This
simple model is feasible in circumstances where the cost of the drug greatly exceeds all other
impacts on the health care system. It is reproducible over time, and thus contributes to consistency in decision-making. The BCCA annual cycle for oncology drug management is illustrated
schematically in Figure 10.8.
The pharmacoeconomic team also estimates the cost of graduated uptake of a new drug in
its first and subsequent years of use, based on BCCA provincial drug data or incidence data.
Although this is not a requirement for the technology review step, it gives confidence in predicting the year by year budgetary impact and so builds confidence within the publicly funded
Ministry of Health. Based on this review of clinical benefit and cost-effectiveness, the funding of
a new drug can be implemented by the senior management of BCCA, within the overall total drug
budget and annual increases agreed with the Ministry of Health. Where a new cancer drug replaces
an existing one, the cost offsets are directly available to the BCCA drug budget; although if a new
drug replaces surgery or radiotherapy the treatment of cost offsets is not straightforward.
The weaknesses in the BCCA drug review processes are that pharmaceutical companies
cannot submit directly, as only those evidence-based treatment policies deemed worthy of a clinical practice guideline and submitted by the Tumour Group experts are reviewed. Industry may
find this inherently unfair and typically prefers automatic review of all new drugs approved by
Health Canada (http://www.hc-sc.gc.ca/index-eng.php). Likewise, it is challenging for industry
to comprehend and interface with multiple different funding processes in the provinces of
Canada. The BC review process does not utilize drug company prepared economic analyses,
which typically use complex Quality Adjusted Life Year models and which endeavour to factor in
the broad range of health cancer costs. The Ontario cancer drug review process, and some national
organizations, such as the National Institute for Health and Clinical Excellence (NICE - http://
www.nice.org.uk/) in the United Kingdom, have adopted an economic review process of clinical
193
194
Evidence
presentation/
published
literature
Clinical support
and utilisation
management
Province-wide
program
implementation
Approval of
new programs
by BCCA
leadership
BCCA
Oncology
Drug
Budget
Management
Tumour group
evaluation of evidence
& submission of proposal
Pharmaco-economic modeling
and estimate of budget impact
Priorities &
Evaluation
Committee
assessment
and ranking
Fig. 10.8 Conceptual diagram of the annual oncology drug management cycle in British Columbia,
Canada.
and economic evaluations submitted by industry. A further potential weakness is that the BCCA
review process is internal, although arms-length from the Provincial Systemic Therapy Programme
which funds and manages the drugs for the BCCA; there are no public volunteers or external
experts participating in the review and ranking of new drugs. Finally, the reviews are conducted
annually, usually well in advance of funding decisions for the next fiscal year, but problems
arise occasionally when there is new evidence of substantial benefit from true breakthrough
drugs; in this uncommon situation, an out of cycle review is conducted and a request for
funding made.
The BCCA process is based on a set of agreed principles, as follows:
1 New therapies depend, first, on evidence-based treatment guidelines, with clearly stated estimates of clinical benefits versus harms. Such guidelines should be based on level 1 evidence,
ideally from well designed clinical trials enrolling large numbers of patients and showing
important and statistically significant benefits, especially in overall survival, as well as quality
of life outcomes, which have been assessed over an appropriate follow-up interval, usually
several years.
2 There has to be a reasonable acceptance of lower levels of evidence in rare cancers or other
clinical situations where large patient numbers are unachievable.
3 Health economic assessments, using pharmacoeconomics models, should have an equivalent

level of scientific credibility to the clinical evidence. Good economic models facilitate
ethically fair and consistent decision-making, over time.
4 The principle of distributive justice should apply; in that decisions should be fair across
the spectrum of diseases (within cancer) and not driven by total budget impact in common
diseases.
5 Decisions should be reasonably intuitive in regard to extrapolation of data in circumstances
where no further data is likely to become available (e.g. trials within selected age groups,
where broader use makes clinical sense).
6 Frank discussion around thresholds for funding, in light of clinical benefit and cost. This is
a thorny problem, in light of the lack of valid data to determine optimal thresholds and
lack societal consensus. Old thresholds from decades ago, for example, renal dialysis
costing $50,000 per life year gained, are unlikely to have a great deal of relevance in decisionmaking in 2010. Nevertheless, each publicly funded health care system needs to be able to
set priorities within a window that is publicly affordable and tolerable to both patients and
taxpayers.
Typically, 8 to 15 proposals for new or modified therapy programmes are reviewed annually,
of which 70 per cent are funded. Only those programmes supported by BCCA evidencebased clinical guidelines are reviewed. The process is timely, as the guideline preparation
and submission to the Priorities and Evaluation Committee typically begin prior to a new drug
completing its review by Health Canada. The economic model is finalized when the drug has been
approved by Health Canada and pricing information is available.
Communication and education

The BCCA implements funding for a new drug by posting on the professional section of its
website www.bccancer.bc.ca the treatment protocol (with details of eligibility, toxicity,
contraindications, dose, schedule, and dose reduction information), physician order sets for use
throughout the province (developed by the oncologists, pharmacists, and nurses), and a patient
information leaflet. A monthly Systemic Therapy Update electronic newsletter is also posted on
the website and e-mailed to all oncologist professionals in the province. The BCCA also provides
educational forums for doctors, nurses, and pharmacists to support dissemination of new
knowledge and safe practices.
The emphasis on prompt dissemination of information and the provision of useful tools
such as protocols, cancer drug manuals, printable doctors orders and patient information
underpin the safe delivery of optimal therapy to all eligible patients. Optimal outcomes are
a direct consequence of universal access to evidence-based therapy.
Optimising drug purchasing contracts

In Canada, when a new drug is approved for sale, the national Patent Medicine Price Review
Board sets a price typically based on the median of prices in the United States and several European
countries. The publicly funded provincial cancer agencies, or the health authorities or individual
hospitals then endeavour to negotiate additional offsets, such as free product, discounts, or
rebates. Several provinces now participate in common drug contracting and bundling processes,
in conjunction with drug contract management companies, to mitigate the impact of expensive
single source products. There may be opportunities to develop this approach into national collaboration, over time. Once the period of patent protection for a new drug expires, opportunities
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for competitive bids from generic companies arise. Unfortunately, in Canada, even generic prices
have remained high, despite their lack of investment in new drug development.
In the seven out of ten provinces in Canada where cancer hormones and oral drugs are reimbursed through provincial drug plans and dispensed through retail pharmacies, the opportunity
for hospital-based drug contracting is lost, but the ability to limit reimbursement to the elderly or
unemployed, and to apply income-linked deductibles to patients and families is gained. This
strategy can control the financial risk to a publicly funded health care system, but at the cost
of reducing compliance with optimal treatment. In circumstances where the clinical benefit is
marginal and the cost is high, this is a reasonable approach. The difficulties arise when patients
cannot afford highly effective, curative, or life-prolonging therapy. In Canada, the majority of
families have some level of private health insurance (often provided by employers) in addition
to publicly funded health care. Unfortunately, the majority of private plans have thresholds
of maximum drug coverage, which frequently leave patients without the means to cover costs of
catastrophic drugs.
The BCCA purchases drugs through hospital contracts, which typically set lower prices
than retail pharmacy prices, and uses the services of a multi-provincial, independent purchasing
group for most of its drug contracting, to maximize cost savings. Other drugs are on individual
contracts with the BCCA, and opportunities for discounts or other risk sharing strategies are
optimized.
Monitoring use of drugs and compliance with protocols

The BCCA has close control of compliance with their evidence-based protocols; this is a key component of good fiscal and clinical management. All patients, whether treated at a BCCA facility or
elsewhere in the province, are registered according to diagnosis; this first step opens a menu of
treatments for that patient. Should more costly drugs be needed, then a second level of submission, including information such as staging or history of prior therapy, is required before a second
tier of drugs is available. The most expensive drugs, or those most at risk of being prescribed in
unapproved, unfunded clinical situations, require an online clinical submission, which goes
through two levels of validation, at the expert tumour group level and by the Provincial Systemic
Therapy Programme, before funding is approved.
Physicians submit clinical information online for approval for the most expensive drugs.
BCCA pharmacists dispense only drugs approved for funding, and the community hospitals
electronically submit their drugs dispensed for reimbursement. Drugs are only reimbursed to
these hospitals if all criteria are met.
The BCCA oncology drug data warehouse Datamart captures the demographic information,
diagnosis, drug, date, and dose for all patients treated in the province. This system is used to facilitate periodic audits of compliance with molecular parameters (e.g. relating drug use to Her-2-neu
over expression), dose, and duration of therapy. This data is also an invaluable resource for utilization management, financial monitoring and projections, and a research resource for clinicians
and scientists. High level information routinely derived include the data shown in Figures 10.1 to
10.7: annual analysis of costs and utilization of specific drugs, especially the Top Ten drugs,
which typically comprise 75 per cent of the total budget; drug costs per patient; total expenditures, numbers of patients, and cost per patient according to diagnostic categories of cancer. This
database is the essential framework for more detailed analyses, which may include assessing
related costs such as diagnostic services and surgery, and predicting cost offsets, for example,
where a drug reduces the risk of recurrence or may avoid procedures such as bone marrow
transplants. Such analyses may use the economic methods described in Chapter 19 of this book.
Although the BCCA drug utilization and compliance management system is electronically
supported, countries where information systems may be unaffordable can also conduct similar
close management through paper systems.
Validating the investment: population-based outcome analysis

In Canada, the ten provinces track and publish annual incidence and mortality statistics for broad
categories of cancer, but this information is insufficiently detailed to evaluate the impact of costly
drug programmes on specific diagnostic and staging sub-categories of cancer. Organized health
care systems now have the advantage of clinical informatics to track overall survival in populations of patients receiving a specific therapy. In British Columbia, the availability of a variety of
provincial databases including the tumour registry, the oncology drug Datamart, and pathology
and stage information of cancer in patients referred to the BC Cancer Agency have facilitated
tracking the population-based impact of cancer therapies. Published examples include the impact
of rituximab when added to the previous standard chemotherapy combination CHOP in advanced
staged aggressive histology lymphoma [29] (Figure 10.9), improvements in overall survival
in four successive historical cohorts of patients with metastatic breast cancer who were eligible
for new treatments [2]; current analysis has evaluated the impact of adding bevacizumab to
chemotherapy in metastatic colorectal cancer [811]. The distinguishing feature of these analyses
is that they assess the impact on clinical outcomes of all patients in the province, not only those
1.0
0.9
Post-rituximab
0.8
Survival (%)
0.7
0.6
0.5
0.4
Pre-rituximab
0.3
0.2
0.1
P < .0001
0
1
Time (years)
Fig. 10.9 Effect of a change in guidelines and drug funding on overall survival of all patients
in British Columbia with advanced stage, diffuse large B-cell lymphoma (DLBCL).
On March 1 2001, the British Columbia (BC) Cancer Agency implemented a new policy
recommending the combination of CHOP and rituximab for all newly diagnosed patients with
advanced-stage DLBCL, regardless of age. The curves show the overall survival of all patients in
the province diagnosed in the 18-month periods before the institution of this new policy
(pre-rituximab, 140 patients), and after its introduction (post-rituximab, 152 patients).
From: Sehn et al., 2005, with permission.
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who were treated in a particular centre. Analyses to date have validated that the impact of the
population is consistent with the expected benefit from published clinical trials.
Canadian national developments in cancer drug review

Current regulatory process for all drugs
The developments in oncology drug review in Canada take place against the background of the
regulatory process for drugs in general. In Canada (population 33 million) the Council of Federal,
Provincial, and Territorial Ministers appointed a Board of Governors for the Canadian Association
of Drug and Technology Assessment (CADTH), which is jointly funded (30 per cent federal,
70 per cent provincial) to conduct reviews of drugs and technology. The Board established
a Common Drug Review (CDR) committee to review all new drugs indicated for ambulatory
pharmacare programmes funded by the provincial and territorial governments. Industry submits
to this process and the CDR, comprising clinicians, pharmacists, and economists with technology
review expertise, evaluate the clinical benefit and cost-effectiveness. Significant resources are
invested in health economic analysis and critiques, external experts are engaged to provide
opinions, and industry is notified of the recommendations of the expert committee prior to the
outcome being published on the website (http://cadth.ca/index.php/en/home).
CDR does not review intravenous drugs delivered in a hospital setting, nor does it have the
benefit of established clinical guidelines from expert groups. In other respects, it provides high
quality reviews in a timely fashion to participating provincial pharmacare plans. As such, it is not
ideally positioned to take on the broad scope of review for oncology drugs in Canada.
Developments in oncology drug review

Canada, like many countries, has internal inconsistencies in drug funding, and is working
towards a more consistent national approach. Nine out of the ten provinces have now embarked
on collaborative planning for a joint interprovincial oncology drug review. The intent has been to
achieve greater consistency in cancer drug review and funding, to develop one portal for industry,
expert groups and publicly funded health care institutions to apply for reviews, to improve
consistency of patient access to drugs, and to assist those provinces with limited human resources
to access high quality reviews.
The provinces agreed in 2007 that there would be an interim Joint Oncology Drug Review
(JODR) process, based on the Ontario model, which supports both Cancer Care Ontario for
intravenous drug review, and the Ontario Drug Benefit plan for oral drugs reimbursed to retail
pharmacies. In the Ontario model, submissions come principally from drug companies, after
their drugs are approved by Health Canada (which does not deal with funding of the drugs). The
Cancer Care Ontario Programme in Evidence-base Care then develops a clinical practice guideline, if deemed appropriate (http://www.cancercare.on.ca/toolbox/qualityguidelines/pebc/).
Then a review of industry-supplied health economic data is done, by internal and external experts,
leading to recommendations referred to the Ontario Ministry of Health through internal
committees.
During the interim phase of the JODR, other provinces have observer status (http://www.
health.gov.on.ca/english/providers/programme/drugs/drug_submissions/inter_oncology_drugs.
html) and receive copies of industry submissions and reports from the committee. Individual
funding decisions remain at the discretion of each province.
While the interim phase has been ongoing, the provinces have been collaborating in the design
of an ideal Joint Oncology Drug Review, including defining principles, modelling governance
SOME OTHER INTERNATIONAL MODELS OF ONCOLOGY AND GENERAL DRUG REVIEW AND MANAGEMENT
and committee structures, including discussions regarding the development of national clinical
practice guidelines, health economics, and ethics processes. An outcome is expected in 2009.
If the model for cancer is implemented, it may be the forerunner of best practices in drug review
in other diseases.
Those involved in planning the future Joint Oncology Drug Review for Canada have communicated the following principles:
The governance structure must ensure fair, objective, transparent processes and must be
accountable to patients, payers, and public.
Cancer drugs must be evaluated within a review process and decision-making framework
which is consistent with those used for drugs in other diseases.
The review process will be multidisciplinary, cross-jurisdictional, and collaborative in

nature, with appropriate input from key stakeholders and linkage to other key national
initiatives.
The review process will reflect an ongoing commitment to excellence through best practices
in a spirit of continuous quality improvement.
The review process will have capacity for rigorous and consistent evidence-based clinical and
pharmacoeconomic reviews to support evidence-based decision making.
The review process will include an ethical framework.
Review processes will be cost efficient, effective and streamlined to support timely decision
making.
The review process will have capacity for data capture and ongoing evaluation (decision
monitoring/performance measurement) to support continuous improvements.
There will be capacity for health outcomes and economic impact analysis to support decision
making and planning.
Some other international models of oncology and general

drug review and management
United Kingdom
In Britain, the National Health Service funds a variety of drugs in both the hospital and retail
pharmacy settings for a population of approximately 60 million. In 1999, the National Institute
for Clinical Excellence (NICE) was established to review drugs and technology, based on clinical
benefit and cost-effectiveness, and to develop national guidelines. NICE will conduct a review
of a drug on request from the Secretary of State for Health; typically, these comprise costly drugs.
Both internal and external expert reviews from independent academic centres are submitted to
the Technology Appraisal Committee, whose recommendations are reported to the NICE board
for a final decision, which, in turn, is binding on the Primary Care Trusts in the United Kingdom.
The NICE Board is appointed by an independent commission, on behalf of the Secretary of State
for Health. The NICE Centre for Health Technology Assessment provides guidance on new or
existing therapies; it works with academic centres and its Technology Appraisal Committee,
which is advisory to NICE. Technology committee membership comes from cross sections of the
National Health Service, patient or care organizations, industry, and universities.
In addition to clinical merit, a cost utility analysis, based on the British model of the cost of
Quality Adjusted Life Years gained, is employed to determine fairly explicit thresholds for funding, in the region of 30,000 UK Pounds per QALY. Less cost-effective therapies are occasionally
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recommended, if there are compelling reasons to do so. All processes and outcomes are published
on the NICE website (www.nice.org.uk/).
The NICE processes are well respected and based on accepted methods. A potential weakness
in the UK system is that the NICE process is not directly linked to the funding processes within
the Primary Care Trusts, thus health care providers may be challenged to balance budgets
and provide broad-based health care services in an equitable manner when new drugs have a
high overall budget impact. NICE has struggled to conduct reviews in a timely fashion and has
recently implemented a fast track process for clinically important new drugs, when routine
reviews were taking more than two years to initiate and complete. As with all local or national
processes, the thresholds for clinical benefit and cost utility may not be readily transferable to
other jurisdictions.
Australia
Australia has a national Pharmaceutical Benefits Scheme (PBS http://www.pbs.gov.au/html/
home) which operates a national formulary subsidizing drugs for coverage in the community
setting for approximately 20 million people. An Advisory Committee (PBAC) reviews drugs for
listing on the PBS. Submissions come from the pharmaceutical industry for all new drugs which
will be dispensed in the community; hospital-delivered drugs are typically not reviewed through
this process.
PBAC reviews both the clinical and the pharmacoeconomic evidence and submits a recommendation to the federal Minister for Health and Ageing for a decision to list the drug. Membership
of PBAC includes community pharmacists, clinical pharmacologists, general practitioners,
specialist physicians, health economists, and members of the public. The methods used are
similar to NICE, but at present there is no fast track mechanism and reviews may take 17 months
or more. Negative decisions appear difficult to reverse, even as clinical data matures, despite
an appeals process. New intravenous cancer drugs are not typically part of the process, which
introduces discordance between funding agencies and their review processes. Transparency for
the public and for industry is considered very good. Final reports are published.
New Zealand
New Zealand (population 4.1 million) has a publicly funded Pharmaceutical Management Agency
(PHARMAC http://www.pharmac.govt.nz/) which manages a national drug formulary.
Applications for funding are accepted from a variety of sources, such as industry, clinicians, or
consumer groups. Industry typically initiates all new drug submissions; these are reviewed by
the Pharmacy and Therapeutics Advisory Committee (PTAC), which considers clinical merit,
cost-effectiveness and budget impact.
PTAC, with members from professional backgrounds in medicine, pharmacy, and economics,
conducts internal economic reviews and is not reliant on industry QALY estimates. Submissions
are prioritized for the timing of review depending on clinical benefit; there is no additional fast
track process. There is a separate Consumer Advisory Committee to provide consumer input
when requested by PHARMAC, but they do not participate in the drug review process. The
PHARMAC Board is appointed by the Minister of Health and operates within a fixed annual
budget, necessitating setting priorities for funding. The decision to list is made by the Board.
New Zealand is a small country, and a major role of PHARMAC is to set priorities for listing
drugs to meet the needs of the population, within a constrained funding envelope. Although the
emphasis has principally been on outpatient drugs, there is a gradual shift to reviewing intravenous drugs too. The focus is general and not specific to oncology.
CONCLUSIONS: STRATEGIES TO MANAGE THE COSTS OF NEW THERAPIES IN A PUBLICLY FUNDED SYSTEM
Conclusions: Strategies to manage the costs of new therapies

in a publicly funded system
The importance of evidence-based clinical guidelines
In Chapter 8 of this book, Dr. Browman and his colleagues discuss the processes of developing
and using evidence-based guidelines. This is the fundamental building block of an effective
population-based approach to better cancer outcomes. Locally, nationally, and internationally,
considerable contributions of oncologists professional time go into the intellectual effort of
determining best practices. The consensus clinical guidelines produced are designed to represent
the optimal use of available therapies to render the best outcomes at greatest efficacy and least
toxicity. Nevertheless, most clinical guidelines do not overtly take into account the cost of therapies. Sometimes these standards and guidelines are regarded as too restrictive by hopeful patients
with dire diseases, and by some of their physicians who are committed to being their advocates.
In reality, the physicians role in advanced disease is to discuss all therapeutic choices in a
balanced way with each patient, not to subject them to false hope or excess toxicity out of a reluctance to face the difficult transition from curative treatment to symptom control and palliative
care. In a well managed system, patients should have access to all clinically important treatments
that are affordable within the funding envelope of that jurisdiction. Evidence-based guidelines
offer the best means of consistent, high quality practice and should be adhered to in the best interest of patient outcomes. Dissemination of guidelines and education about their use not only
improves patient access and outcomes, but also indirectly contributes to good financial management and conserves scarce resources needed to implement other important innovations.
Technology reviews: Evaluation of clinical benefit,

economic impact, and priority setting
Leaders of health care systems need to be able to choose which priorities to fund, based on reasonable expectations of benefit in relationship to ability to pay. Earlier in this chapter, we discussed
several technology review processes which have had a profound impact on decision making in
their national or regional milieus. In countries with limited financial resources, and limited
human resources in time and expertise to conduct complex evaluations, any or all of these
processes can be adapted to meet the health care and societal needs of that environment.
Governments and Ministries need to address overall social welfare and health needs, starting with
clean water, adequate food, basic housing, education, maternal and child health, prevention,
immunizations and basic health care, and including beneficial medical interventions, depending
on available resources; the threshold for funding cancer drugs can be adjusted to the reality of the
environment and the reasonable expectations of its citizens.
Drug utilization management

Some issues in drug purchasing have been discussed in the Canadian context in the previous
sections, and many countries are moving towards national or regional purchasing systems to
lower costs. When a new drug is funded for a specific clinical indication (e.g. for advanced disease
in one particular type of cancer), it is very tempting for doctors to prescribe it in other types of
cancer, or sooner or later in the natural history of a cancer. Often, there may be ongoing clinical
trials to see if the drug is effective in other cancers, so naturally, both patients and their doctors
are keenly interested in broadening access in advance of confirmatory data from clinical trials.
As a consequence, management utilization to comply with proven and funded indications is
critical in protecting drug budgets from over-utilization and is a key aspect of fairness to all cancer
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patients to protect their access to treatments of proven efficacy. An effective drug utilization data
system is essential for this, and a variety of paper-based and electronic systems have evolved
to control utilization; the BC system is described earlier in this chapter. In the United States,
managed care organizations such as Kaiser Permanente have been leaders in drug utilization
management. The costs of such administrative systems are of course a major issue. It is relatively
easy to develop drug utilization controls in a hospital system, but much harder to implement in
the reimbursement of drugs to ambulatory patients, where full clinical information is typically
lacking. Progress in linking clinical information and reimbursement is compromised both by
lack of universal clinical informatics systems and the understandable barriers of privacy and
confidentiality legislation.
In developing and middle-income countries with much more restricted resources, there needs
to be a centralized, organized system to provide selected cancer drugs and supportive drugs,
especially for pain relief; this is discussed further by Ian McGrath in Chapter 22 of this book.
Careful selection of highly effective and cheap drug therapy in the majority of diagnostic groups
is optimal. Countries such as Cuba have pursued this approach. Excellent examples of trade-offs
might be restricting patients with hormone sensitive breast cancer to tamoxifen rather than the
modestly more effective, but much more expensive, aromatase inhibitors; offering orchiectomy
rather than expensive LHRH drugs for advanced prostate cancer; choosing the cheapest generic
chemotherapy drug regimens for breast, ovary, colon, and other treatable cancers; and offering
highly effective and quite affordable drugs for selected curable diseases such as Hodgkins, some
lymphomas and leukaemias, and testicular cancer.
Investment in molecular and genetic cancer pathology

The road to the future world of cancer drug management is considerably brightened by the
gradual development of sensitive and specific markers of tumour susceptibility to treatment.
Prognostic markers predict the risk of a poor or good outcome in an individual cancer patient,
and, typically supplement the prognostic information given by clinical and pathology staging
systems, which take into account the pathological diagnosis and grade of the tumour, as well as its
size, location, lymph node involvement, and status of metastatic disease.
Predictive markers are specific to the likelihood of a tumour responding to a therapeutic intervention; some predictive markers are also prognostic markers, if they predict overall outcome.
The best known examples are oestrogen and progesterone receptors in breast cancer, which have
an impact on prognosis and specifically indicate that, where these receptors test positive, both
curability in newly diagnosed breast cancer and disease control in metastatic cancer are very
favourably influenced by drugs such as tamoxifen or aromatase inhibitors, which interfere with
oestrogen metabolism. Likewise, the discovery of Her-2/neu testing in breast cancer and the
development of Herceptin, which targets this growth factor, has had substantial clinical benefit
for patients whose tumours strongly over-express Her-2/neu.
Very recent data in advanced colorectal cancers treated with epidermal growth factor target
drugs (cetuximab (Erbitux) or panitumumab (Vectibix)) have demonstrated that 40 per cent
of patients with the mutated K-ras gene do not benefit from therapy with these drugs, whereas
those with wild-type K-ras have substantial benefit. Clearly, this predictive information is valuable both for patients who will benefit from the interventions, and also for those who will not,
preventing unnecessary treatment and unwanted effects, as well as reducing costs.
There is much ongoing research to identify new biomarkers, and effective panels of oncology
markers that can discriminate between prognostic groups of patients. The process of identification of potential markers, and their further evaluation in studies including clinical trials, to
determine whether they have a reliable role in predicting benefit from various treatments
REFERENCES
is complex. It is strategically very important to incorporate acquisition of tumour tissue in

the conduct of the majority of clinical trials, so that new biomarkers can be validated in such
settings.
Although this field of predictive testing is only now coming to the forefront, organizations that
fund health care would be penny wise and pound foolish if they did not invest appropriately in
predictive testing of tumour tissue to mitigate the costs (and toxicity for patients) of using drugs
in patients who would not benefit. These predictive molecular or genetic tests themselves may be
costly, and the processes of critical evaluation of their usefulness must be applied in making decisions to fund them. Clearly, for a new drug with a proven predictive marker test, both drug and
pathology test should be funded simultaneously; but in reality, nationally and internationally,
stove pipes of different governance or reimbursement systems for drugs versus laboratories can
be an obstacle for this sensible approach. Rational application of good laboratory testing, ideally
in a quality-controlled high-volume laboratory setting, offers the potential to revise clinical
practice guidelines to conform to clinical benefit and holds the promise of sparing patients
toxicity from ineffective therapy, while reducing costs to the health care systems. The opportunity
beckons to redirect costs saved and invest in effective new drugs or technology.
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19 Blanke C, Demetri GD, von Mehren M, et al (2008). Long-term results from a randomized phase II trial
of standard- versus higher-dose imatinib mesylate for patients with unresectable or metastatic gastrointestinal stromal tumors expressing KIT. JCO, 26(4):62025.
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29 Sehn LH, Donaldson J, Chhanabhai M, et al (2005). Introduction of combined CHOP plus rituximab
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23(22):17.
Chapter 11
Community supports for people

affected by cancer
Michael Jefford1
This chapter considers the supportive care needs of people affected by cancer not just those who
are told that they have a cancer diagnosis, but also their family members and friends, who are also
often profoundly affected. The critical role of health care professionals in meeting the needs of all
people affected by cancer is underscored. The many and varied sources of additional support
provided outside the clinical setting are then described. The review focuses upon the needs
of adults with cancer, though many of the issues and examples are also applicable to children,
adolescents, and young adults with cancer. A critical issue is how to best integrate clinical
programmes with the variety of supports outside the clinical setting.
Unmet needs and psychosocial distress in people

affected by cancer
Cancer is a source of much stress; as noted by Mills and Sullivan, few words can evoke such
an immediate, life threatening reaction as the word cancer [1]. Patients and their families have
to cope not only with the initial diagnosis of cancer and an uncertain outcome, but also with
unfamiliar procedures and the presentation of treatment options. Patients may experience a
range of physical, emotional, and psychological effects as a result of the disease and its treatment.
Life can be changed in many practical ways for patients, their families, and friends. Patients and
their carers may be unable to work, may have changed roles, and may experience significant
financial impact.
Psychosocial distress, anxiety, and depression are common, not only in cancer patients, but
in those close to them, particularly family members. In a large population study of people with
various different types of cancer, Zabora reported a prevalence rate of psychological distress
of 35 per cent [2]. In a study of 117 newly-referred outpatients, Ford and colleagues estimated
that 26 per cent had significant anxiety and 7 per cent likely depression [3]. Several other studies
report similar levels of anxiety and depression. Kissane and colleagues found that one third of
cancer patients spouses, and one quarter of their offspring, had clinical depression, compared
with a prevalence of depression in the general population of just 6 per cent [4].
Patients report high levels of unmet needs at diagnosis, through treatment, beyond treatment,
when living with advanced disease, and towards the end of life [5,6]. Every person will have a
Michael Jefford, MBBS, MPH, MHLthServMt, PhD, MRACMA, FRACP, Clinical Consultant, Cancer
Council Victoria; Associate Professor of Medicine, University of Melbourne; Consultant Medical
Oncologist, Division of Haematology and Medical Oncology, Peter MacCallum Cancer Centre, Melbourne,
Victoria, Australia.
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COMMUNITY SUPPORTS FOR PEOPLE AFFECTED BY CANCER
unique set of needs, which will vary throughout the cancer journey. Patients frequently report the
need for additional information and for emotional support. The vast majority of cancer patients in
Western countries prefer as much information as possible, regardless of whether it is good or bad.
Providing information promotes understanding and increases psychological wellbeing [7].
However patients are often dissatisfied with the amount and quality of information they receive
[8]. Patients who feel poorly informed are not only dissatisfied with their care, but also may have
reduced wellbeing [9]. Lack of information can cause distress for both patients and their families.
Support provided in the clinical setting

Healthcare professionals are the most frequent, and preferred, source of cancer information
[10,11]. Hospital medical specialists, general practitioners, nurses, pharmacists, and radiation
therapists are all important sources of information. As well, social workers, pastoral care workers,
psychologists, and psychiatrists are important sources of emotional and psychosocial support.
The opportunity to discuss feelings with a member of the treatment team or with a counsellor can
result in reduced levels of psychosocial distress [7].
Effectiveness of providing psychosocial care

There is good evidence that providing psychosocial support results in broad benefits for patients.
A meta-analysis of 116 intervention studies found that educational and psychosocial interventions benefited patients in terms of all outcomes assessed: anxiety, depression, mood, nausea,
vomiting, pain, and knowledge [7]. Meyer and Mark reported a meta-analysis of 45 randomized
controlled trials showing that patients who received psychosocial interventions experienced
significant and likely clinically important improvements in emotional adjustment, social
functioning, treatment and disease-related symptoms, and overall quality of life [12].
Sheard and Maguire reported two meta-analyses considering the effect of psychological
interventions on anxiety and depression [13]. They report that preventative psychological interventions have a moderate effect on anxiety, though a small to negligible effect upon depression.
These interventions may be more successful if targeted to those at risk of, or suffering from,
significant psychological distress. Whilst the majority of the above interventions were delivered
within the clinical context, benefits may well be seen when non-clinicians, including well-trained
peers and volunteers, deliver such interventions.
Clinical practice guidelines emphasize the need to check the amount of support available to the
patient, to recommend additional support as required and provide information about where this
is available [14]. A critical issue is the identification of people with unmet needs and those with,
or at risk of, psychosocial distress. This is of course a major challenge.
Challenges in meeting all supportive care needs in

the clinical setting
Supportive care is an umbrella term encompassing all services required to support people with
cancer, as well as those close to them, throughout the cancer journey. Supportive care includes
provision of information, self-help and support, psychological support, social support, symptom
control, rehabilitation, spiritual support, palliative care, and bereavement care. For people affected
by cancer, supportive care needs may include physical, psychological, social, information, and
spiritual needs.
Different people will have a different set of supportive care needs, which will also likely change
over time. Practical needs, such as the need for help with childcare assistance, or travel assistance,
SUPPORT IN A BROADER CONTEXT AND THE BENEFITS OF SOCIAL SUPPORT
will apply only to some, for example. Similarly, the need for advice and self care strategies regarding symptoms will vary. There is considerable evidence to suggest that clinicians do not adequately
identify and respond to the breadth of patients needs.
Clinicians tend to underestimate the amount of information wanted by patients [15,16].
Similarly, much of the probable psychiatric morbidity experienced by patients with cancer appears
to go unrecognized and is therefore untreated [17,18]. Numerous studies suggest that clinicians
may ignore or fail to appropriately respond to and address emotional or other quality of life
concerns [19]. Yet there is good evidence to suggest that providing information, emotional
support, and counselling improves the well-being of people with cancer [7,12,13].
Of course, time is a major problem in almost all clinical encounters. Health care professionals,
including medical staff, are often perceived to be too busy to provide all the information that
patients, families, and friends may desire. Patients may not feel comfortable raising concerns with
their doctor, they may not know how to express their concerns, may feel embarrassed, may feel
that the doctor will discount their concerns, or believe that their doctor is unable to assist. Doctors
and other health professionals may not ask about emotional issues or discuss difficult issues
because of concerns that such discussions might be too challenging or that they do not have the
skills to assist.
There are major gaps between recommended psychosocial care [14] and current practice.
With the growing number of people affected by cancer, the known high level of unmet
needs, and the very limited oncology professional workforce, it is essential that all available
resources and supports be rallied and coordinated to ensure best outcomes for people affected
by cancer.
A process for the identification of supportive care needs is critical, though this must be coupled
to a mechanism to respond to these needs. Efforts have begun to routinely screen patients
for supportive care needs, recognising the full breadth of what constitutes supportive care [20].
Further work needs to be done to determine the most effective ways to regularly assess unmet
needs. Routine collection of quality of life and unmet needs data, with feedback to physicians,
may result in improved awareness of quality of life concerns and may impact upon symptom
control [21,22]. Such a strategy may not, though, necessarily improve patients emotional wellbeing [22]. Placing the sole emphasis upon doctors recognising and responding to all needs is
unlikely to be a successful strategy.
Patients cannot gain benefit from the broad range of support services if they are unaware
of them. Steginga and colleagues found that many people with cancer are unaware of available
services [23], while a large number of people unaware of services believe that they would utilize
and value these services if they were made aware of them. These authors note that patients
less frequently receive advice about psychosocial support, compared with treatment-related
information [23]. Again, we need a means to ensure that patients are aware of all the supports that
are available for them.
Fitch points out that a fundamental challenge is to match a range of possible supportive
care interventions to a patients identified supportive care needs. A range of options should
be available from which patients can choose [24].
Support in a broader context and the benefits of social support

Some people may feel that their health care team does not have the time or the capacity to deal
with all of their needs. They may also prefer support away from the hospital or treatment centre.
They may prefer the opportunity to obtain information and support where and when it suits
them, rather than under the constraints of the clinical setting. This might include gaining support
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at home, over the telephone or using the Internet, or through face to face contact at home or in
the community. Some patients may find the anonymity of telephone lines an easier way to discuss
concerns or they may need support that can only be provided by a peer someone who truly
understands their own situation.
Patients gain significant support and also obtain information from family and friends [10,11].
Family and friends can provide an integral part in a patients cancer care [2529]. Patients
also gain support from a broader social group, including neighbours, co-workers, clergy, and
patient support groups. Raleigh reported that family, friends, and religious beliefs were the most
commonly reported sources for supporting hopefulness [25].
Social support is considered to be a multidimensional construct that includes the provision of
emotional, informational, appraisal, and practical, tangible support [30]. The adequacy of social
support and social connectedness appear to impact upon patient quality of life, coping, and
adjustment to illness [28]. This appears to be applicable across a broad range of cancer diagnoses
[28]. People who perceive they have poor support are more likely to experience greater psychological distress [25,26,28,31]. Further, patients adjustment to living with cancer can be shaped by
the reactions of their family and intimate others. Descriptive data suggests that patient adjustment is enhanced by family and partner support [27,29].
A broad range of support programmes and services are available outside the clinical setting.
Major challenges are ensuring that patients are aware of the services and determining how
to integrate support provided in clinical and non-clinical, community settings.
Fitch points out the need to identify individuals supportive care needs and provide a range
of options to meet these [24]. Possible strategies will be determined as much by patient characteristics as by identified needs; a key to successful holistic care is coordination of a range of services,
across different settings. While patients may receive diagnostic and treatment care in clinical
settings (hospitals, cancer centres, clinics and doctors rooms), they live in communities away
from the clinic. Some may appreciate supportive care services being available in the clinic,
but others may prefer to engage with services in their community. Likewise, some may appreciate
professional support, whereas others might prefer information and support from friends,
volunteers, or peers.
Fig. 11.1 considers three dimensions related to the provision of information and support:
firstly, the complexity and specificity of information and support. While all people will appreciate
some general information, many need information that is more tailored. A second dimension is
the level of expertise of people providing information and support; this is relevant when considering planning and delivery of supportive care services. It does not suggest the value that people
might gain from support providers at each level; someone may gain great value from a peer
support volunteer, for example, yet in the same circumstance, gain little from a highly trained
professional such as a psychiatrist. The third dimension is the setting of care.
Fitch has provided a useful model [24], depicted in Figure 11.2. It considers varying levels of
need, relative numbers of patients, and emphasizes the need for a suite of services and resources
that can be mobilized to address individual circumstances. Figure 11.2 suggests that supportive
care needs may be met through a blend of providers and that many needs can be met through
non-professional supports. As Fitch suggests, ideal care should seamlessly span different
settings.
Support programmes and services in a community setting

The remainder of this chapter considers the various programmes and services that are commonly
available to people affected by cancer, away from the clinical setting.
SUPPORT PROGRAMMES AND SERVICES IN A COMMUNITY SETTING
Tailoring of information and support to individual needs and circumstances
General
Specific
Level of expertise of people providing information and support
Completely passive
booklets, Internet
General public
volunteers
Peer support
volunteers
Information
specialists; clinical
staff
Highly specialized
professionals
Increasing professional training
Setting / context
Community setting
Clinical setting
(Hospital, clinics, doctors rooms)
Fig. 11.1 Three dimensions in the process of providing information and support.
Educational programmes
Many patients report a need for further information to assist them in understanding their
cancer experience as well as to adjust to living with the ongoing effects of treatment [5,6,8].
Family members often have similar needs. Structured education programmes play a major role
in meeting these needs. Such programmes may be conducted in clinical or in non-clinical,
community settings and may be facilitated by healthcare professionals, peers, or volunteers.
General needs
All patients
General information and basic support

Clinical teams, telephone help lines
Many
Emotional support programmes

Support groups
More specific /
complex needs
Some
Specific suggestions
Counselling
Few
More intensive therapies

Psychotherapy
Fig. 11.2 Supportive care intervention model.

Source: From Fitch (2000) [24], with permission.
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Educational programmes may be offered face to face, or provided via the Internet. Some patients
may feel that an educational programme is more appealing than a support programme.
Interestingly though, participants (cancer patients as well as family and friends) generally report
improvements in knowledge and understanding, as well as emotional benefits.
As described previously, a meta-analysis of 116 intervention studies found that educational and
psychosocial interventions benefit patients across a wide range of outcomes including anxiety,
depression, mood, nausea, vomiting, pain control and knowledge [7]. A second meta-analysis
reported by Meyer and Mark considered 45 randomized controlled trials and found that patients
who received psychosocial interventions experienced a significant, and likely clinically important
improvement in emotional adjustment, social functioning, treatment and disease-related symptoms, and overall quality of life [12].
Numerous reports describe results from various educational programmes. One example is the
Australian Living with Cancer Education Program, which is described by Todd et al [32]. This
programme has six broad aims: (1) to develop knowledge of cancer, (2) to encourage supportive
discussions, (3) to meet with and learn from others who have had similar experiences, (4) to build
on coping skills, (5) to foster self-acceptance, and (6) to encourage social action [32]. Typically,
each programme involves between 10 and 15 participants with a range of cancer diagnoses and at
various times since diagnosis, as well as family and friends. Sessions are run by two facilitators,
who may have varied backgrounds. Facilitators have significant training and are supported by the
resources of the Cancer Councils Cancer Information and Support Service. In general, the programmes consist of two hour sessions, held weekly, generally for four to eight weeks. Information
is delivered using a range of media including written materials, video and through discussion.
Emphasis is on interaction. The standard programme covers eight broad topics: (1) introduction,
(2) what is cancer? (3) cancer treatments, (4) personal reactions, (5) communication, (6) selfesteem and intimacy, (7) self-care, and (8) where to from here? [32] Roberts and colleagues have
reported an evaluation of the programme, involving 1460 participants [33]. There was high satisfaction with the programme and both patients and family and friends reported significant
improvement in coping abilities, knowledge, and communication and relationships with significant others and with health professionals [33]. Further evaluation has shown positive changes in
measures such as illness perceptions and emotional functioning. The programme may be particularly helpful for family and friends [34].
Telephone help lines

Many countries operate telephone information and support services for people affected by cancer.
Accessing information and support via the telephone has a number of potential advantages. One
is the broad availability of the service essentially available to anyone with access to a telephone.
Thus people living in geographically isolated areas may easily access support. Many services provide a free or toll-free number, removing cost as a barrier to obtaining information and support.
Patients, family members, and friends can access the service at a time that suits them, and in their
own environment. Time is less likely to be a significant constraint. For many people, the anonymity of a telephone service is a further advantage.
For many cancer control organizations, a telephone information line is a major element of
a cancer information service (CIS). Morra and colleagues describe a network of CIS the
International Cancer Information Service Group (ICISG) [35]. The authors describe a CIS, as a
programme that offers one-on-one personalized information to the public, patients, family
members and friends, and health professionals; is staffed by qualified, trained information specialists; provides accurate, up-to-date cancer information; can provide information through
multiple access points (mail, telephone, Internet, or face-to-face); and is usually part of an
organization that already has some other programmes such as public education, patient information materials, or patient services [35]. The ICISG has developed a web-based CIS Tool Box,
designed to assist cancer organizations to set up or to improve a CIS [35]. The Tool Box can be
accessed from the ICISG website www.icisg.org.
Several reports have described the operation of cancer telephone information services [3642].
Most services report that patients with a diagnosis of cancer tend to represent the minority of all
callers [36,41,42]. Other callers include family and friends, health professionals, and members
of the general public. Compared with non-callers, those who access CIS tend to be more seriously
ill, are more stressed, and are more likely to be women, younger, and in treatment [36,4042]. For
patients with a cancer diagnosis, there is a relative over-representation of patients with breast
cancer, and an under-representation of prevalent cancers such as lung and colorectal cancer.
Callers tend to be better educated and reside in areas associated with medium to high socioeconomic status.
Patients with cancer, and family members, tend to call for information about the cancer
diagnosis and about treatment options and to obtain emotional support [36,42]. Members of the
general public are more likely to call about cancer prevention and early detection or for general
information about cancer.
Accessing a cancer help line can help people to understand and feel better about their situation
and can improve their confidence and interaction with their treating team. Manfredi et al. found
that many callers share information supplied by the CIS with their doctors and consider the information to be helpful in making decisions about treatment [40]. The National Cancer Institutes
(United States) CIS found that almost half of callers surveyed had discussed the information
that CIS provided with a physician and that the information helped them make a treatment
decision [43].
The vast majority of callers appear satisfied with the service, feel that their information needs
are met, and feel that they gain emotional and psychological support from the interaction
[36,40,41,44]. Interestingly, few callers appear to learn of cancer help lines through their health
care team. This is of concern, as many people who might gain benefit from accessing the line
cannot do so if they are unaware of the service (see Steginga et al [23]).
Peer support programmes

Peer support programmes are based on the premise that shared experience is a valuable resource
that assists individuals to adjust to, and cope effectively with, stressful events [45]. Peer support
can be provided in a variety of different formats: face to face (groups or one to one), over the
telephone (group or one to one) or via the Internet (generally as a group). These programmes
help by providing emotional and informational support from the perspective of shared personal
experience. Several reviews suggest that peer support can improve personal relationships and
social support, increase a sense of belonging, improve mood, and improve relationships with and
satisfaction with health care professionals [4648].
It has been suggested that peer support can impact positively on psychological adaptation to
a cancer diagnosis and treatment, either directly (by decreasing feelings of isolation, encouraging
health behaviours, and promoting positive psychological states), or by helping patients to reframe
appraisals of their situations and improve coping responses [49].
Hoey and colleagues performed a systematic review to identify models of peer support for
cancer patients and assess evidence of their effectiveness in improving psychosocial adjustment
[46]. Only eight randomized controlled trials were identified in the review. These generally
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suggested that peer support programmes can lead to an increase in perceived social support and
may reduce psychosocial distress. The authors of this and other recent reviews note significant
methodological problems with studies including small sample sizes, lack of long-term follow-up,
and limited outcome measures [4648]. Also, relatively little research has been conducted with
people with cancers other than breast cancer, and little work has considered the impact of peer
support programmes for the volunteers providing support.
Group support programmes

An initial report by Spiegel suggested that cancer support groups might improve survival
for people with advanced breast cancer [50]. This result has not been reproduced in subsequent
studies [51,52]. However, there appears good evidence that support groups can improve psychological outcomes [52].
Several studies note that support group participants value being with others like them, sharing
experiences, and gaining new knowledge, including information about cancer, treatments, coping,
and self-care strategies [51,5355]. Feeling alone and desiring information are common reasons
for joining a cancer support group [54].
Ussher and colleagues have considered the unique features of support groups, compared with
other supportive relationships [53]. Ninety three participants (75 women, 18 men) from nine
representative Australian cancer support groups took part in participant observation and focus
group interviews. Data was analysed using positioning theory. Participants indicated that support
groups provide a sense of community, unconditional acceptance, and information about cancer
and its treatment, in contrast to the isolation, rejection, and lack of knowledge about cancer experienced outside of the group [53]. As a consequence of group involvement, participants had
increased confidence and sense of control in relation to self, living with cancer, and interactions
with others, in particular the medical professionals. The support group was also positioned
as facilitating positive relationships with family and friends. No difference was found between
professionally-led and peer-led support groups.
An interesting observation, reported by Butow and colleagues is that support group
participants desire that ideally the group be considered credible by the participants treatment
team [54]. Again, this emphasizes the need for professionals to be aware of, endorse, and refer
their patients to support groups.
One to one support

Macvean and colleagues have conducted a systematic review of literature reporting on the use
of volunteers in one to one support programmes for people with cancer [56]. Volunteers could
be peers or not. Few (28) papers were suitable for review and the methodological quality of the
studies was generally poor. However, regardless of whether volunteers were peers or not, one to
one volunteer-based support programmes were generally well received and appeared to result in
benefits, including improved well-being and/or reduced anxiety [56]. In accordance with other
reviews, major benefits from this, and other modes of gaining peer support, were the opportunity
to meet with someone who had survived the cancer, the opportunity to speak with someone who
has a shared experience, and the sharing of information and coping and self-care strategies
[47,48,56].
Many one to one face programmes exist. Reach to Recovery is one example. It is a peer
programme in which women who have had treatment for breast cancer are trained as volunteers
to provide information and support for women recently diagnosed with breast cancer.
The volunteer is able to respond to the individual needs of the woman recently diagnosed.
The programme appears to be well received. Programme participants are generally satisfied and
feel that the programme offers support and improves participants quality of life [57].
Telephone-based peer support

Telephone-based peer support offers a number of advantages over face-to-face support. Firstly,
the need for travel is avoided and people from rural or remote areas are able to participate.
Secondly, participants can access support from the comfort of their own home and are able
to access support even if they are feeling too unwell to leave their home. Some people do not feel
comfortable meeting face to face [58]. Telephone-based peer support can be provided in a group
or one to one. While a number of studies have described professionally-run telephone support
(for examples, see Gotay and Botomley[58]) there is great opportunity for peers to provide telephone support for cancer patients and carers. There have been, to date, very few randomized
controlled trials using this strategy [46].
Cancer Connect is an example of a one to one telephone-based peer support programme [45].
The Cancer Council in Australia runs this programme. It connects people who have cancer with
volunteers who have had a similar experience and is free and confidential. This support is available at any stage throughout the cancer journey at diagnosis, during, and after treatment. All
volunteers undertake a training programme and are supported by a programme coordinator and
the cancer nurses from the Cancer Council Helpline. Cancer Connect matches people according
to type of cancer, but also can match according to gender, age, family circumstances, types and
side effects of treatment, etc. Cancer Connect is able to match people with a cancer diagnosis,
carers of someone with a cancer diagnosis, parents caring for a child with a cancer diagnosis, and
people who carry a gene that increases their risk of developing cancer. Cancer Connect appears to
be very well received. The majority of people responding to an evaluation of the programme were
enthusiastic and felt that their experiences were positive [45].
Internet/online support
People with cancer very commonly access information about cancer and treatments from the
Internet. Bass and colleagues considered Internet use in 498 people, newly diagnosed with cancer
[59]. Patients were recruited from callers to a NCI CIS. Patients regarded the Internet as an
important source of information. Internet use was significantly associated with several selfefficacy variables, including confidence participating in treatment decisions, asking physicians
questions, and sharing feelings of concern [59].
Despite the widespread use of the Internet and suggestion that it has important potential
benefits for patients, there is some reluctance from cancer clinicians regarding patients use of the
Internet to access information. In a survey of 333 health professionals belonging to the Victorian
Cooperative Oncology Group, a group of mostly medical, oncology healthcare professionals,
Newnham et al. found that many clinicians (68 per cent response rate) are concerned about the
accuracy of information found on the Internet (64 per cent of respondents believed it accurate
only sometimes, and 23 per cent rarely), and the vast majority (91 per cent) believed that information from the Internet had the potential to cause harm to patients [60]. Nevertheless, they
generally supported patients information-searching, believing it allowed them to be better
informed (58 per cent), and did not affect their ability to cope with their illness (49 per cent), or
their trust in, and relationship with, their doctor (69 per cent and 67 per cent, respectively) [60].
Clinicians concerns about online information and support services may present an obstacle to
patients accessing such resources: either because clinicians may not refer their patients to resources
or because they may discourage access and participation.
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Patients may also use the Internet to obtain support. There is growing use and availability
of Internet-based support groups and online discussion boards and Internet mailing lists.
While some online support services may be of high quality, limitations to accessing these include
availability of Internet, cost, and time considerations.
In their recent systematic review of peer support programmes for people with cancer, Hoey
and colleagues [46] identified two randomized controlled trials examining the impact of Internet
support groups. In the study reported by Gustafson and colleagues, younger women with breast
cancer were randomized to receive a booklet about breast cancer or to receive Comprehensive
Health Enhancement Support System (CHESS), a home-based computer system providing
information, decision-making, and emotional support [61]. Two hundred and forty six women
were randomly allocated to each arm. At two- and five-month follow-up, the CHESS group had
better perceived social support and greater confidence in their own involvement in their health
care. No significant differences were seen in quality of life. The second study was reported by
Winzelberg et al. [62]. In this study 72 women with breast carcinoma were assigned randomly to
a 12-week, professionally-facilitated web-based support group (Bosom Buddies). Women could
access discussion, post messages, and read answers and stories. The study found that this intervention could reduce depression, cancer-related trauma, and perceived stress. Effect sizes were
moderate. This may be an effective strategy to reduce distress and provide support. Notably, this
strategy was professionally facilitated. A challenge to the provision of this sort of approach may be
the cost and availability of professional facilitators.
Online boards
Patients and caregivers access Internet mailing lists and participate in online discussion primarily
to gain information about types of cancer, treatments, effect of cancer and its treatment on
others, and how to communicate with health care providers [63,64]. Participants also appear to
gain some emotional support through these mechanisms.
Drop-in centres
Some hospitals and cancer centres operate drop-in centres or Cancer Information and Support
Centres (CISC) [65]. Other centres operate away from the treatment environment and may be
operated by cancer charities or government agencies. Volunteers, health professionals, cancer
survivors, carers, or a combination of these groups may staff a CISC. Such centres represent
further opportunities for patients to gain information and support.
In a scoping study conducted prior to the development of a CISC in Belfast, 400 surveys
were distributed to patients and carers [65]. A strongly expressed view was that the CISC should
be a medical and white coat free zone underscoring the need for patients to escape the
clinical environment and emphasising the need for a broader consideration of needs [65]. Many
felt that the CISC should offer counselling and emotional support, offer programmes to facilitate
communication within families and with friends, and provide information and support
programmes about sexuality and relationships. The majority of respondents wanted the CISC
to establish support groups, provide access to spiritual and religious support, information
and access to complementary therapies and offer financial advice also. There was a strong
emphasis on provision of written and verbal information, presented in a manner that facilitates
understanding.
Advantages of the CISC are that people can access information and support, away from the
clinical setting, at a time that is convenient to the person. A CISC is available not just to patients,
but also to family members, friends and the general public. The availability of counselling and
complementary therapies may also be a benefit for many.
ISSUES BEYOND THE INITIAL CANCER DIAGNOSIS AND TREATMENT
Other volunteer services and programmes

Volunteers have very varied backgrounds. In the cancer setting, they might include cancer survivors, past or current carers, current or retired health care professionals, or members of the general
public. Volunteers with a personal cancer experience are a core part of peer support programmes
and may facilitate educational or support groups or provide one to one support.
Macvean conducted a systematic review of literature reporting on one to one volunteer
support programmes for people with cancer [56]. The review included both peer and non-peer
support programmes. As described earlier, the review generally suggested that programmes
are beneficial, though acknowledged the lack of rigour in both conducting and reporting
studies [56].
An Italian report evaluated the activity and impact of volunteers, in the hospital and at home,
as judged by patients with cancer, nurses, and the volunteers themselves [66]. Volunteers were
particularly useful to improve a patients mood (80 per cent) and to solve practical problems
(47 per cent). The main form of intervention of all volunteers was to give psychosocial support
to patients. Other activities of the volunteers were support for the family, assistance in social
activities, and to give information [66].
Volunteers may thus represent a further means of providing support for patients, within and
apart from the clinical setting. An innovative Australian volunteer-based intervention, the
Pathfinder Programme, was designed to address unmet needs and potentially impact on anxiety
and depression, in people with recently diagnosed colorectal cancer. Volunteers without a prior
history of bowel cancer were trained to provide telephone-based information and support,
tailored to the needs of patients, identified through self-report questionnaires [67]. Preliminary
evaluation showed that the programme is acceptable to patients. Patients considered that
telephone contact with the volunteers was beneficial and found that volunteers could understand
their situation and could normalize concerns [67]. In a randomized controlled trial involving
482 patients, 227 patients received support from a Pathfinder volunteer and 255 received usual
care alone [68]. Patients who had a Pathfinder volunteer reported fewer unmet needs and lower
anxiety at 3 months follow up (though no significant change in depression), compared with
patients in the usual care setting. Further follow up will be necessary, though this result suggests
that such a volunteer programme may provide valuable support and improve psychosocial
outcomes.
Issues beyond the initial cancer diagnosis and treatment

Earlier detection of cancer and improved treatments has resulted in a growing number of people
cured of cancer. This, combined with the ageing population, has resulted in a greatly increased
number of people living beyond cancer. Estimates suggest that there are more than 12 million
cancer survivors in the United States alone. The majority of people who are cured of their cancer
experience few major consequences of the disease and its treatments. But for a sizeable minority,
the experience of cancer and treatment leaves significant physical, emotional, psychological, and
practical impairments and changes [69,70].
Many survivors have ongoing unmet needs toward the end of treatment and during the phase
of post-treatment survivorship. Traditionally, the major focus of clinical services, post treatment,
has been upon the detection of disease recurrence. Services are not oriented toward the detection
and management of late and long-term effects of cancer and treatment or to the identification
and amelioration of psychosocial distress and need. Given the breadth of survivors unmet needs
a far broader approach needs to be developed. Provision of information about what survivors
might expect following the completion of treatment is an essential minimum requirement [69].
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Many survivors have ongoing needs for support and reassurance. Fear of recurrence is extremely
common.
Cancer information and support services described in earlier sections need to ensure that they
respond to the needs of survivors as much as the needs of people recently diagnosed and during
treatment. Support groups are as relevant to survivors as to people newly diagnosed or having
treatment. Likewise, cancer telephone help lines have a role in educating and supporting survivors beyond treatment completion. Again, patients will be optimally supported by integrating
care in the clinical setting with the services and resources discussed previously.
Support for families, friends, and carers

Cancer affects more than just those who are told that they have a cancer diagnosis. Family and
friends can be profoundly affected. Those close by may need to provide significant assistance with
practical tasks as well as emotional support. Carers lives can be changed significantly. Work
situation and role functioning may be altered. There can be significant financial repercussions.
Whilst providing emotional support, carers have to themselves deal with their own emotional
reactions to the cancer diagnosis and threat to life.
In an Australian study, Kissane et al. found that one third of cancer patients spouses were
likely depressed, compared with a prevalence of depression in the general population of only
6 per cent [4]. Levels of stress experienced by partners of patients with cancer has been reported
to be similar to, or higher than, that of patients themselves, yet carers receive less support
[27,29,7173]. There is growing recognition that carers needs must be identified and addressed,
ideally through consideration of the patient in a broader context and acknowledgement that the
person with cancer is not the sole focus of attention [74,75]. Interventions need to start early in
the course of illness and be family-focused. Caregivers need to be provided with appropriate
instruction and guidance [75].
Carers are often ill prepared for the task of care giving [74,76]. In a study reported by Soothill
and colleagues [76], 43 per cent of carers had significant unmet needs. People with unmet needs
were more likely to be caring for someone with advanced disease and more likely to be in poor
health themselves. Carers had unmet needs around aspects of managing daily life, emotions, and
social identity [76]. Caregivers often require additional information and instruction in technical
and care skills.
Issues for children who have a parent with cancer

Several studies with various types of cancers report that children of parents with cancer are
susceptible to levels of stress and in need of support [7779]. As previously described, Kissane and
colleagues found that one quarter of cancer patients children had clinical depression, compared
with a prevalence of depression in the general population of just 6 per cent [4]. Several studies
have suggested that children can experience problems as a consequence of their parents cancer
and its treatment. Usual school and social routines may be disrupted which can exacerbate
childrens worries. Difficulties with communication can further increase anxiety in children [79].
Parents may underestimate or may not recognize distress in their children at all [78].
A clinical approach to prevent distress and disruption in children is predicated on inclusion
of children in the unit of treatment from the onset. Additional services can support parents and
children. Telephone help lines can offer advice and assistance for parents to talk with their children
about their cancer. Peer support programmes may also provide valuable advice. Furthermore,
CISC may be able to offer parents support and counselling. Support services for young people with
cancer are often also able to support young people who have a parent with cancer.
REFERENCES
Conclusion
This chapter has focussed particularly on the supportive care needs of adults with cancer. Each
persons needs are unique. How people cope with a cancer diagnosis will depend on a range of
factors, including previous experiences dealing with illness and major life events, existing coping
skills, and the availability of social support. Patients turn to their doctors and other healthcare
professionals for information, support, and advice regarding treatments. People may still have a
range of unmet needs. Many services exist for people affected by cancer, away from the clinical
setting. These services offer the opportunity to help address the needs of patients, their families,
and friends. Challenges are, firstly, to ensure that all people who might benefit from these services
are aware of them and secondly, to determine how to coordinate supports in the clinical and nonclinical settings to meet the individual needs of all people affected by cancer.
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Chapter 12
Improving quality of life

Shirley Bush, Eduardo Bruera1
Oncological treatments aim for local and/or systemic control. They may be administered with
a curative or palliative intent. If cancer in a patient cannot be cured, then the focus of treatment
changes to achieving an improvement in survival time, reducing symptom burden, optimizing
performance, and hence improving quality of life (QOL). Palliative care is the last of the four
components of a cancer control programme, after prevention, early detection, and diagnosis and
treatment [1].
Patients with advanced cancer may experience physical, psychosocial, and spiritual difficulties
throughout their illness which impact on their overall QOL. The main objective of palliative care
is to improve the QOL for both patients with life-threatening illness and their families [2].
Therefore, it is necessary to assess QOL to ascertain if this goal is being met.
Defining quality of life

Therefore, one must practice the things which produce happiness, since if that is present we have
everything and if it is absent we do everything in order to have it.
Epicurus (341271 B.C.) [3]
An initial challenge is how to define QOL. Depending on interpretation, it may be similar to the
concepts of life satisfaction and happiness [4]. QOL is multi-dimensional and has been described
in various ways in the literature [4, 5], although many authors do not give an explicit definition
of QOL [6]. Ferrans used a definition of a persons sense of well-being that stems from satisfaction or dissatisfaction with the areas of life that are more important to him/her[7]. A consensus
group used a definition based on the World Health Organization definition of health: QOL
includes psychological and social functioning as well as physical functioning and incorporates
positive aspects of well-being as well as negative aspects of disease and infirmity[8]. In considering QOL as a broad concept, Kassa and Loge described it as how is your life, everything taken into
consideration [9].
The concept of QOL means different things to different people, and there may be cultural and
geographical variations in its interpretation and expectation [10]. An online medical dictionary
has defined QOL as: a patients general well-being, including mental status, stress level, sexual
function, and self-perceived health status[11]. Well-being of the whole person encompasses not
only health, but also the non-medical aspects of a patients life. Many authors use the term of
Shirley H Bush, MBBS, MRCGP, FAChPM, Assistant Professor, Division of Palliative Care, University of
Ottawa and Palliative Care Physician, The Ottawa Hospital/Bruyre Continuing Care, Ottawa, Ontario,
Canada; and Eduardo L. Franco, MD, DrPH, Professor of Epidemiology and Oncology, Director,
Division of Cancer Epidemiology, McGill University, Montreal, Quebec, Canada.
222
IMPROVING QUALITY OF LIFE
health-related QOL, but some have cautioned against the limitations in using this restrictive
term as health concerns cannot be isolated from other contributors to QOL [12]. Patients with
advanced cancer also consider more domains contributing to their life satisfaction compared
with other patient populations and physically healthy people [13]. For the purpose of this
chapter, the focus will be QOL in the global sense.
It is important to stress that an individuals perception of their own QOL is subjective in nature
and changes with time. For this reason, the patient should be the primary source of information
in its determination. If this is not possible, then it should be measured from the patients perspective, without pre-conceived judgement (see later chapter section on measurement by proxy).
QOL is a complex multi-dimensional concept, which includes many domains or dimensions
such as physical well-being, functional ability, emotional, and social well-being [5]. Sexuality is
expressed in all these four domains. The importance of the existential domain and spiritual wellbeing has also been highlighted [14]. Other domains that have been proposed include cognitive
function, control, financial, physical environment, and areas related to communication (provision and sharing of information, and decision-making) [4, 15]. Control refers to the ability of an
individual to maintain command over the areas of their life that they can still influence. Effective
communication impacts on emotional and physical well-being and enhances patient and
healthcare professional satisfaction during a consultation [16]. Speech difficulties are common
for patients who have been treated for head and neck cancer, especially after treatment with
laryngectomy [17]. Patients with brain cancers or neuropsychiatric syndromes also commonly
experience communication difficulties.
The term self-advocacy encompasses some of the proposed domains. Self-advocacy refers
to an individuals ability to effectively communicate, convey, negotiate or assert his or her
own interests, desires, needs, and rights. It involves making informed decisions and taking
responsibility for those decisions (see Figure 12.1) [18].
The Gap theory of Calman described the concept of QOL as being the difference between
present experiences and the hopes and expectations of how a person wants to be[19]. In order
to estimate the gap, an assessment of the patients concerns and priorities should be made.
Realistic goals to improve QOL should be set with the involvement of both patient and family.
The outcomes should be evaluated and the goals should be reviewed periodically and revised as
needed, especially as disease progresses. Positive contributors to QOL may counteract, at least in
part, the negative contributors. Narrowing the discrepancy between the patients and familys
expectations and the patients current status or likely future reality may enhance QOL [19, 20].
(see Figure 12.2).
QOL is dynamic in its nature and will change with the impact of illness, treatment, support
systems, and variations in other positive and negative contributors. Patients frequently have
to adapt to their disease and the effects of treatments. A change in behaviour, such as dietary
modification, may be needed or they may acquire new skills through adaptation to disability,
such as using walking aids, and caring for a stoma or catheter. Both the mind and human spirit
also have a fortunate ability to adapt in the presence of major life-threatening illness. This may be
influenced by resilience, previous coping style, and also outlook on life. Patients may need to
re-conceive their perception of self as in the role of a person with cancer. This leads an individual
to review and change their expectations as they re-evaluate priorities for their remaining life.
In 1999, Sprangers and Schwartz proposed a theoretical model of response-shift which may
affect health-related QOL [21]. This model is not a rigid framework and not all QOL changes are
affected by a response-shift. It has five major components incorporating a change in health
status of the individual (the catalyst), personal characteristics such as personality and background, mechanisms (behavioural, cognitive, and affective) to enable adjustment to the catalyst,
CHALLENGES AND ADVANTAGES OF MEASURING QOL
Physical
QO
Psychological/
Emotional
Physical symptom impact

e.g. pain, fatigue,
dyspnoea, nausea,
vomiting, cachexia/
anorexia, sleep
e.g. depression
anxiety
adjustment reactions
Cognitive
Function
e.g. neuropsychiatric
syndromes
- Delirium
- Dementia
Social/Family
Physical
Functioning
e.g. mobility
continence
self-care
Communication
e.g. marriage
other relationships
role activities
social activities
perceived support
physical environment
financial
Control
Sexuality/
Intimacy
- body image
- self esteem
Self-Advocacy
Spiritual/
Existential
Includes religion
QO
Fig. 12.1 A theoretical model for domains and factors that influence quality of life (QOL)
considering patients with advanced cancer.
the response-shift, and perceived QOL. The working definition for response-shift was a change
in the meaning of ones self-evaluation of QOL as a result of changes in internal standards, values,
and the conceptualization of QOL. There may also be a feedback loop if the perceived outcome
QOL is felt to be suboptimal. This enables the mechanisms for adjustment to be reviewed in order
to improve perceived QOL or for modification of the perception of QOL.
Challenges and advantages of measuring QOL

In clinical practice, health care professionals should routinely inquire about patients QOL.
As QOL is a dynamic process, it should be assessed on a regular basis to enable earlier detection
of changes [12]. This systematic administration of a QOL instrument has been shown to open
up communication between physician and patient, enabling discussion about personal and
potentially difficult areas that are often neglected and avoided [22].
QOL measurement enables patients to make informed treatment choices to optimize their
QOL. Assessments of QOL may aid prognostication for survival, with decreased survival
predicted by higher burden of certain physical symptoms and lower performance status [23].
In addition to acting as a quality assurance measure to help improve an individual patients care,
QOL measured in more general terms can be used as an outcome measure, e.g. to demonstrate
the impact of a particular intervention or treatment, or the effect of a palliative care service [24].
223
224
Expectations
Review expectations and

set realistic goals
Desired outcome: improve patient QOL
gap
QOL
Reduce contributors in all

domains having negative
impact on QOL and
enhance positive
contributors
Current
status
Initial diagnosis/
disease recurrence
Palliative care/
Treatment response
Time
Fig. 12.2 Enhancing quality of life (QOL) by reducing the gap [19] between expectations and
current status.
Barriers have reduced the frequency of use of QOL instruments in the clinical setting, including
the time needed for administration [25]. In addition, most QOL instruments have been developed for use in research and therefore may not be suitable for use in daily clinical practice.
Computers with touch screens have been used with effect [26]. Clinical issues may also affect
completion including the presence of pre-existing cognitive deficits, development of cognitive
changes, and patients at the end of life who are too unwell. Instruments should not take too long
to administer to avoid being burdensome, especially in frailer patients, for whom it is an advantage if the instrument can be administered by being read aloud (see later chapter section on
measurement by proxy).
Global QOL instruments assess overall subjective QOL experience, e.g. with a single item
question, How has your quality of life been? QOL instruments may have subscales that inquire
about specific domains or dimensions [9]. This is especially relevant when the disease is more
advanced. Common specific dimensions that are assessed include fatigue, pain, anxiety, and
depression. It is important to consider cultural variations. For example, patients may report
depression in more semantic terms than emotional terms in some countries. Variations in population may be targeted depending on the instrument used. For example, a generic QOL instrument may be applicable to the whole population and other multi-dimensional instruments
may be suitable for specific disease or diagnostic groups, such as cancer-specific or palliative
care-specific instruments [9].
Traditionally it has been stated that since multiple dimensions impact on the construct of QOL,
there is a need to use multi-dimensional assessments [5]. More recent authors have suggested that
single-item global assessments can provide a reliable measure of QOL [27]. In practice, patient
QOL assessments often include combinations of global and more detailed disease-specific and
domain-specific instruments depending on the information required.
OVERVIEW OF QOL ASSESSMENT TOOLS USED IN PATIENTS WITH ADVANCED CANCER
In addition to assessing QOL in patients, QOL of the family caregiver or family member should
also be assessed by considering what is important for their own QOL as individuals. Acting on
the information provided may help reduce burnout in the family caregiver. Family caregiver QOL
is lower in most domains, as compared to the general population, especially in the psychological
domain [28, 29]. The QOL for the family unit is also important but much more difficult
to measure.
Overview of QOL assessment tools used in patients

with advanced cancer
Multiple assessment tools are available, but currently there is no gold standard. This section will
briefly outline some of the available instruments that have been developed for patients with
advanced cancer and their family caregivers.
Spitzer quality of life uniscale and Spitzer quality of

life index (QL-Index)
These tools were designed for use by physicians to rate their patients QOL but they can be
self-administered and answered by patients [30]. The uniscale consists of a horizontal bar (with
no gradations) that is marked with an X between anchors of lowest quality and highest quality
to indicate rating of overall QOL during the previous week. (Further descriptors to these anchors
are given in the tool).
The validated QL-Index has five categories: activities, daily living, health, support, and outlook.
Each category has three items which score 0 (poor) to 2 (good QOL), providing a total QL-Index
with a maximum score of 10. The QL-Index refers to a time frame of the previous week; the
median completion time is one minute.
Edmonton symptom assessment system (ESAS)

In addition to the feeling of well-being, the multi-dimensional ESAS routinely records the patients
current subjective perception of multiple symptoms (pain, fatigue, nausea, depression, anxiety,
drowsiness, appetite, and shortness of breath) [31]. The patient rates each of these symptoms on
a scale of 0 to 10, where 0 indicates that the symptom is absent and 10 rates it at the worst possible
severity. It should be noted, however, that a score of 0 out of 10 is the converse for appetite and
feeling of well-being, as 0 out of 10 represents the best appetite or best feeling of well-being and
10 out of 10 represents the worst possible appetite or worst possible feeling of well-being. The
ESAS was designed to be self-administered but, if needed, it can be completed with the assistance
of the patients caregiver (family or health care professional). The ESAS has been validated for
internal consistency, criterion validity, and concurrent validity [32]. This is a practical tool to use
in a busy clinical setting.
Rotterdam symptom checklist (RSCL)

This self-administered validated tool was developed to measure physical and psychological
symptoms reported by cancer patients participating in clinical research [33]. The initial checklist
consisted of 34 items with the addition of 8 items for activities of daily living. Completion time
was 8 minutes. Subsequently, a revised version of the RSCL was produced with 31 items and
a timeframe of 1 week compared with 3 days in the initial version. It consists of a four point,
Likert-type rating scale (from not at all to very much) and there are no specific items for the
social dimension. The 1996 RSCL manual [34] has a total of 30 items with 23 items covering
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physical symptom distress and 7 items covering psychological distress. The next section
has 8 items on activity level (on a four point scale between unable and without help). The
final item is an overall evaluation of life: All things considered how would you describe your
quality of life during the past week? This is a seven level Likert item (between excellent and
extremely poor).
Functional assessment of cancer therapy - General (FACT-G)

This validated QOL measure was developed to evaluate patients receiving cancer treatment [35].
It is now a generic core questionnaire for the Functional Assessment of Chronic Illness Therapy
(FACIT) measurement system [36]. These are copyrighted tools. The FACT-G (version 4)
contains 27 items covering 4 primary QOL domains: physical well-being, social/family wellbeing, emotional well-being, and functional well-being. The measure has a 5-point scale from
0 to 4 for responses ranging from not at all to very much, and is to be answered in reference to the
previous 7 days. The last statement on the FACT-G is I am content with the quality of my life
right now. The average time to complete the questionnaire is 5 to 10 minutes. It was originally
developed for patient self-administration, but may be administered by an interviewer. The
FACT-G needs an overall item response rate of over 80 per cent to be an acceptable indicator of
a patients QOL. There are now many FACIT subscales (cancer-specific and treatment-specific
subscales, in addition to symptom-specific and non-cancer-specific subscales) to complement the
FACT-G. As many of the questionnaires are now available in more than 45 different languages,
cross-cultural comparisons can be made.
Two non-cancer-specific subscales for palliative care and spiritual wellbeing have recently
been developed as part of the FACIT system. The FACIT-Pal (version 4) consists of the FACT-G
as the core questionnaire followed by an additional nineteen items.
European Organization for Research and Treatment of Cancer

EORTC QLQ-C30 and EORTC QLQ-C15-PAL
The European Organization for Research and Treatment of Cancer (EORTC) developed the tool,
EORTC QLQ-C30, to produce an integrated modular approach to evaluate the QOL of patients
participating in international clinical trials [37]. The most recent version is QLQ-C30 Version 3.0
[38]. It is a copyrighted instrument that has been translated and validated into 81 languages. The
current version contains 30 items and asks questions in reference to the past week, with a 4-point
scale from 1 to 4 for responses ranging from not at all to very much. The last two items inquire
about global health and global QOL (on a 1 to 7 scale ranging from very poor to excellent). As it
is a modular tool, the QLQ-C30 core questionnaire can be supplemented with disease-specific
modules and other specific questionnaire modules. The tool has been validated in patients with
metastatic disease [39].
The EORTC QLQ-C15-PAL is a 15-item core questionnaire for palliative care that was derived
from the EORTC QLQ-C30 [40]. This questionnaire was developed to assess the QOL of palliative care cancer patients and is a copyrighted instrument [41]. Questions have been raised as to
this questionnaires sensitivity and lack of key questions covering existential and spiritual issues,
and social support [42].
The McGill quality of life questionnaire (MQOL)

This differs from many other instruments in that it measures the existential domain and positive
contributions to QOL [43]. This 17-item questionnaire measures overall QOL, and 5 distinct
sub measures of physical well-being, physical symptoms, psychological symptoms, existential
MEASUREMENT BY PROXY
well-being and support [14]. The questions from the MQOL are in reference to the previous
two days. It can be administered during disease progression as frequently as every two days.
It takes 15 to 20 minutes for patients to complete (up to 35 minutes with verbal supervision).
It has been validated [14], including in different languages [44]. The MQOL has been revised to
Quality of Life in Life-Threatening Illness Patient Version (QOLLTI-P) [15].
The schedule for the evaluation of individual quality of life

(SEIQoL) and SEIQoL-direct weighting (SEIQoL-DW)
These two validated measures are interesting because they highlight the individual nature of QOL
[45]. Both the SEIQoL and the shorter SEIQoL-DW consist of a three-stage semi-structured
interview [46]. First, the patient identifies five areas that they consider to be important to their
QOL. A shortlist of examples may be read to the patient if they have difficulty nominating
the areas. In the next stage, the patient rates their current status or level of function for each
nominated area. Finally, they give a weighting of importance to each area. The median time to
complete the SEIQoL is 40 minutes so completion may not be possible in very fatigued patients.
The full measure may be useful for in-depth exploration of individual QOL. The SEIQoL-DW
takes approximately 15 minutes to complete.
Instruments to measure QOL in cancer survivors

The Quality of Life Cancer Survivors (QOL-CS) instrument contains 41 items to be rated on a
scale from 0 to 10. Four domains of QOL are covered: psychological, physical, social, and spiritual
well-being [47]. The Quality of Life in Adult Cancer Survivors (QLACS) scale contains 47 items
covering 12 domains with 7 generic and 5 cancer-specific domains [48]. A recent review concluded that there was a need for a psychometrically credible QOL instrument to evaluate cancer
survivors one to five years post diagnosis [48].
Instruments to measure QOL in family caregiver

The Caregiver Quality of Life Index Cancer (CQOLC) scale is a self-report consisting of
35 items using a 5-point Likert scale to assess QOL in the family caregiver of cancer patients [49].
It takes 10 minutes to complete. The Quality of Life in Life Threatening Illness Family Carer
Version (QOLLTI-F) was developed from family caregivers in a qualitative study. The final
version contains 16 items and 7 different domains: state of caregiver, patient well-being, quality
of care, outlook, environment, finances, and relationships. It also includes the caregivers perception of the patients condition [50].
Domain-specific instruments
These may be useful to focus on specific areas to provide a more detailed assessment. Examples
include the Brief Pain Inventory (BPI) [51] and FACIT-Fatigue (FACIT-F) 13-item subscale
from the FACIT measurement system [36].
Measurement by proxy
When patients are too unwell or fatigued, QOL assessments may be made using a proxy rater,
such as family caregiver or healthcare professional. Many studies have compared the patient QOL
assessment (which may not be reliable itself) directly with that of the proxy [52]. However, if
proxy ratings are assessed independently, their reliability is similar or slightly better than patient
ratings. Patient-proxy agreement tends to be moderate to high. It is positively influenced by the
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closeness of the relationship and with prospective assessments but may be less congruent with
greater family caregiver burden [53]. There tends to be more agreement with physical function
and symptoms that can be assessed objectively but less agreement in the psychological domain
and with subjective symptoms, such as pain. There tend to be fewer discrepancies in patientproxy agreement if the patient has extreme (very good or very poor) health status. Patienthealthcare professional proxy agreement may be less congruent. Cohen et al. in 1997 found that,
more than 50 per cent of the time, palliative care staff did not identify those patients scoring
severe distress on the MQOL [14].
Quality of life according to cancer trajectory

Diagnosis
When the initial diagnosis of cancer comes as a complete shock, the patient may experience
acute psychological distress. Some patients may have already suspected the diagnosis from their
presenting symptoms. Partners of patients with cancer also experience significant stress. The
effect of a cancer diagnosis on QOL may be influenced by life circumstances at the time for
the patient and their family.
After a cancer diagnosis, patients may experience depression, anxiety, and psychological
distress, although a meta-analysis concluded that cancer patients as a group did not experience
more psychological distress than the normal population, with the exception of an increased rate
of depression [54]. Newly diagnosed breast cancer patients have been found to have the lowest
QOL in both psychological and sexual domains [55]. Patients living alone had a significantly
lower QOL than those cohabiting, especially in the younger age group 19 to 39 years.
Primary treatment
Treatment-related side effects negatively impact on both physical and psychosocial domains [56].
Post-surgical disfigurement may have enduring effects on body image and sexuality. QOL may
initially decrease due to local and systemic side effects of therapies, such as chemotherapy induced
nausea and vomiting. Fatigue is very common depending on the treatment regimen. However,
overall QOL then often improves despite ongoing treatment. This may be related to the optimism
and support provided by regular visits to health care professionals [57]. Education regarding the
treatment regimen, anticipated side effects and psychosocial support are often provided.
Women with breast cancer aged 65 years and older have been shown to experience a decline
in physical and mental health 15 months following breast cancer surgery [58].
Advanced cancer recurrence

Recurrence will often mar emotional, physical, and functional well-being of patients, as well as
significantly affecting the emotional well-being of their family caregiver [59]. Social support and
family hardiness have a positive effect on QOL. At this time, patients will often experience an
increase in many physical symptoms, such as fatigue and pain, and a reduction in physical and
social role functions, leading to a reduction in overall QOL [39].
Many patients will elect to undergo treatments with toxic side effects for the chance of increased
survival at any cost over likely negative impact on QOL [60]. Their decision may be related to
their own better expectations of prognosis or a need to be doing something rather than nothing
and a sense of retaining control and hope. A mother with young children may continue treatment
with adverse effects in the hope that this will buy more time with them for their well-being. QOL
issues may not always be considered by physicians as a reason to modify or discontinue treatment
IMPACT OF SUPPORTIVE AND PALLIATIVE CARE
in patients receiving palliative chemotherapy if there is no tumour progression or treatment

toxicity [61].
Palliative care and end of life care

Towards the end of life, QOL for patients and their families is affected by poorly controlled
symptoms, a further decline in physical function and social activity, and anticipatory grief.
Patients may express concerns regarding the future for themselves and their family, increasing
dependency, and being a burden to others. At this stage, patients identify different diverse values
as being important to them in the prelude to death. These include maintaining dignity, pain
and symptom management, preparation for death, achieving a sense of completion (resolving
conflicts, spending time with family and friends, saying goodbye to important people, as well as
spiritual issues and meaningfulness at the end of life), participation in treatment decisions, open
communication, being treated as a whole person, and avoiding inappropriate prolongation of
dying [62, 63].
As a patients condition deteriorates, overall QOL may remain the same, with those domains
contributing most to QOL changing in both positive and negative directions. Some domains,
such as social and family well-being, may not decline, but scores in the spirituality domain may
improve [64] with existential issues becoming more important to patients towards the end of life.
Hwang et al. in 2003 described a longitudinal terminal decline QOL model with different QOL
domains changing at different rates [65]. Their study in predominantly male Veteran Affairs
patients showed three time points. Six months prior to death, slow declines in symptom distress,
performance status, and QOL well-being (functional, emotional, and physical domains of
FACT-G) started. Psychological symptom distress worsened three months prior to death. By two
months prior to death, an accelerated decline in symptom distress, performance status, and most
QOL parameters occurred.
Survivorship
With earlier diagnosis and improved treatment regimens, the population of cancer survivors is
growing. Three stages have been described. Acute survival (from diagnosis to end of first year),
extended survival (from end of first year to three years later) and permanent survival [66]. The
majority of survivors fear recurrence with the probability of recurrence for most cancers being
greatest during the extended survival phase.
Patients often describe positive benefits in surviving a life-threatening illness, including a
re-prioritization of values and a determination to make the most of life. Living with a spouse
or partner predicts a positive response to QOL [47]. However, there are also many negative after
effects of the cancer diagnosis and treatment to be negotiated. These include: physical barriers to
optimal function such as fatigue and cognitive changes; changes in body image and infertility and
impact on sexuality; psychological sequelae including ongoing psychological distress, anxiety,
and depression; socio-economic stresses and family distress [67]. Identifying and addressing
these issues early with psychosocial interventions may help improve QOL.
Impact of supportive and palliative care

Supportive and palliative care strive to improve the QOL of patients and families facing lifethreatening cancer, and other life-limiting illnesses, with holistic interdisciplinary care in a variety
of settings (e.g. hospital, inpatient acute palliative care unit, inpatient hospice, and home) providing effective pain and symptom relief, spiritual and psychosocial support from diagnosis
to the end of life. In addition, palliative care offers bereavement support to families.
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The traditional model of supportive and palliative care involved late referral to the interdisciplinary team. Involvement of these teams usually occurred late in the illness trajectory after the
failure of curative and palliative cancer treatments. The emerging model of supportive and palliative care programmes involves the integration of care from the moment of diagnosis to the
moment of death/bereavement or survivorship. This emerging model allows for a contribution of
supportive and palliative care to improve the QOL of cancer patients and their families throughout the whole trajectory of illness (see Figure 12.3).
By providing intensive symptom control, specialist palliative care has been shown to improve
the QOL of patients, including existential well-being [6870]. Although the majority of cases can
be managed by the primary physician, patients and families with complex needs or refractory
symptoms should be referred to the local specialist palliative care team for assistance. QOL of the
family caregiver may be improved by the early provision of respite care and supportive counselling. Chapter 14 in this book discusses the contributions of supportive and palliative care teams
in more depth.
Consideration of domains in improving QOL

For descriptive purposes, the common domains are reviewed separately in this section. However,
in the clinical setting, domains should not be considered in isolation but with a multidimensional approach as they exert cross influences on each other. For example, treatment
of psychological or existential distress will often lead to improved pain control.
Physical well-being domain

Patients with advanced cancer may experience a multitude of physical symptoms including pain,
fatigue, delirium, dyspnoea, anorexia, nausea, vomiting, constipation, abdominal distension,
(i) Traditional Model
Cancer treatment
Supportive and
palliative care
Bereavement
Diagnosis
Death
(ii) Emerging Model
Cancer treatment
(curative and palliative)
Supportive and palliative care (QOL)
Diagnosis
Bereavement
Death
Fig. 12.3 Role of cancer treatment and supportive and palliative care in improving quality of life
(QOL) in cancer patients.
CONSIDERATION OF DOMAINS IN IMPROVING QOL
and lymphoedema (see also Chapter 14). The number of physical symptoms has been shown
to be associated with increased psychological distress and poorer overall QOL [71, 72]. Routinely
assessing and effectively managing symptoms will help to improve QOL. As well as recording
symptom intensity, it is important to measure the combined impact of symptoms, e.g. on sleep,
function, and mobility. Treating uncontrolled physical symptoms will often improve other
parameters such as psychological distress.
Fatigue is a very common symptom which is often overlooked. It occurs in over 80 per cent of
patients undergoing treatment with chemotherapy and/or radiotherapy. Among all the physical
cancer-related symptoms, fatigue impacts the most on a patients QOL with 91 per cent reporting
that it inhibited leading a normal life [73]. During cancer treatment, an exercise programme
has been shown to improve fatigue and QOL in breast cancer patients [74]. In advanced cancer
patients, pain is usually due to the primary cancer itself or metastases, or as a side effect of
oncological treatments. Pain severity is also associated with impaired QOL [75].
Delirium, an acute confusional state that results from diffuse organic brain dysfunction,
frequently occurs in advanced cancer patients, with over 80 per cent of patients with advanced
cancer developing delirium in their final days [76]. Delirium has a significant impact on patients
and family members QOL because of loss of effective communication and potentially distressing
symptoms [77].
Physical function domain

Physical functioning assessment currently plays a minor role in palliative care QOL instruments
[78]. Patients often require assistance with physical activities of daily living, especially as
disease progresses and frailty increases. Limitations due to fatigue are common. Referral to an
occupational therapist and physiotherapist is invaluable, as is provision of suitable equipment to
maximize function and reduce dependency on others. Wound dressing supplies and continence
aids are frequently necessary. Community services may be accessed to provide assistance with
personal hygiene, and domestic chores.
Psychological/emotional well-being domain

In addition to the emotional domain, the QOL of depressed patients is affected in other areas
including social, cognitive, and physical domains [79]. It is important to detect and treat psychological distress as this will improve QOL. There is a higher likelihood of experiencing anxiety and
depression with some cancer diagnoses, such as pancreatic cancer, and under the age of 30 years
and over the age of 80 years [80]. Depression is also associated with a desire for hastened death in
terminally ill cancer patients [81]. Patients with minimal social support may experience more
anxiety and depression and a worse QOL than those with more support [82]. Psychosocial interventions and group psychotherapy may be beneficial. Expressive coping, allowing the active
processing and expression of emotions, is related to improved QOL [83]. There is some evidence
for massage and aromatherapy massage in reducing anxiety [84].
Social well-being and family domain

The social impact of advanced disease is wide ranging. Cancer and its treatment place an increased
stress on personal relationships, and exacerbate pre-existing relationship difficulties. Family
members are also likely to experience psychological distress. It is important to evaluate this,
as they also need support and may require ongoing formal counselling to assist them in their
care-giving role and during bereavement. The needs of children of parents with cancer can be
overlooked at this demanding time. Parents may need assistance in communicating difficult
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issues with their children and preparing the child for life without them. In addition to family,
peers, and counsellors, support to children and adolescents may be provided by schools, universities, and church and youth groups. Older patients and those who are married or living with others
tend to have a higher QOL [82].
Financial issues are common and are often not captured by important QOL tools. (The EORTC
QLQ-C30 has a single question specific to financial difficulties) [38]. Financial issues may be
compounded if patients have no sickness entitlement or have exhausted their sickness allowance.
Patients and their families may be self funding medical and pharmaceutical costs of treatment,
including complementary and alternative therapies. Ongoing illness may have led to a permanent
loss of employment and loss of regular income, especially if the patient was the sole income provider in the household, leading to financial stress and a risk of mortgage defaulting. An employed
spouse or partner may also experience financial strain if they have taken unpaid leave in order to
fulfil the carers role at home. There may be outstanding business and legal issues, including
preparation of a will and funeral arrangements. In addition, a single parent may wish to document their choice of responsible adult for the ongoing care and welfare of their children.
Referral to a social worker is fundamental in obtaining skilled assistance for patients and
their families in accessing government and community supports, referral to other agencies, and
providing supportive counselling to patients and their families. A social work component in
a multidisciplinary team leads to improvement in QOL in the social domain [85].
Spiritual well-being and existential domain

There is a unique and significant association between spirituality and QOL [86]. Spirituality
comprises the following dimensions: meaning of life, transcendence, higher power or source
of energy, relationships, and religion [87]. Some patients experience death anxiety with fear of
the unknown, fear of the state of non-existence, and the impending separation from loved ones.
An existential crisis may occur with overwhelming spiritual suffering.
Religion may be an important component of an individuals spirituality, with specific beliefs
and rituals, and ceremonies shared as a community. Use of religion in coping with the experience
of life-threatening cancer improves overall QOL [88].
Chaplains and pastoral care workers are integral to a specialist palliative care team. Both patients
and their families may benefit from their assistance with spiritual issues, especially if these are
beyond the skills of the regular team. Other spiritual care interventions that have been used
include psychotherapy, music, art, relaxation, therapeutic touch, and aromatherapy [89].
Sexuality and intimacy

Yes, I havent had enough sex[90].
Sir John Betjeman CBE (19061984), British poet laureate, in an interview for the television
documentary Time with Betjeman (February 1983), having been asked whether he had any regrets.
Sexuality and the ability to experience intimacy are also fundamental QOL issues [91]. Human
sexuality is multi-dimensional and complex. In palliative care, sexuality is influenced by the
impact of the cancer and its treatment, psychosocial distress, in addition to social and cultural
norms, and will be affected by pre-existing problems in relationships. Sexuality should not be
limited to the genital level of sexual function, sexual intercourse, fertility, and reproduction.
Consideration of sexuality includes body image, self-esteem, mood, support, and sense of emotional connection and intimacy [17]. Sexuality means different things to different people, and
may also vary according to life-stage [92]. Intimacy often refers to an emotional or physical
CONCLUSION
closeness between partners, but can also be present in emotional and social interactions with
other people.
Cancer survivors have a high incidence of altered sexuality, which is long lasting, or even
permanent, and can impair QOL for both the cancer survivor and sexual partner [93]. Patients
with localized prostate cancer report sexual and urinary symptoms negatively impacting on QOL
[56]. Different modalities of treatments for a particular cancer may impact on QOL differently.
Cervical cancer survivors treated with radiotherapy had worse sexual functioning and poorer
QOL than those treated with radical hysterectomy [94]. Breast cancer survivors experience
hormone changes and menopausal symptoms, especially vaginal dryness affecting sexual
function, as well as body image changes. Information on spouses behaviours and attitudes
towards sexuality after treatment and formal sexual counselling may improve breast cancer
survivors QOL [95].
The commonly used QOL instruments cover the sexuality domain minimally. For example, on
the FACT-G (version 4), there is one statement on satisfaction with sex life (with an option not to
answer), and another on feeling close to partner or support person. The Rotterdam Symptom
Checklist has only one question on sexuality (decreased sexual interest) and the EORTC
QLQ-C30 has no questions addressing sexuality [34,36,38].
It is important for health care professionals to address issues of sexuality for all patients from
diagnosis and through all stages of the cancer trajectory, regardless of their age [96] and independent of cancer site, as sexual problems are not limited to those patients with cancers directly
affecting sexual organs. Physicians should inform all cancer patients about intimate and sexual
changes after cancer and its treatment. Some patients will not wish to talk about this area of their
personal lives, so health care professionals need to gain permission to discuss the topic first.
Health care professionals should routinely assess, with sensitivity and without assumptions
or prejudice, for intimacy and sexual needs of all patients whether they have a known partner or
not, regardless of age, sexual orientation, sexual preferences, site of cancer, and type of cancer
treatment [92]. Patients and their partners will vary in their desire for information and practical
strategies for sexual intercourse and intimacy.
As cancer progresses, the focus of discussions may change to maintaining sexual and physical
intimacy, especially when sexual intercourse is no longer possible. Towards the end of life,
physical intimacy, and the need to touch and be touched remain important for QOL [91].
Barriers to discussing sexuality remain for many health care professionals. These include
discomfort with the topic, lack of knowledge, and cultural issues, but the communication skills
required for these discussions are the same as for any sensitive topic. The BETTER model was
developed to assist nurses in discussing sexuality issues [97]. Resources written in familiar
language are available for people affected by cancer, in the form of printed literature and websites
(e.g. CancerHelp UK, the patient information website of Cancer Research UK (www.cancerhelp.
org.uk), and National Cancer Institute, US National Institutes of Health, patient information,
and comprehensive peer-reviewed information for health professionals (www.cancer.gov).
Conclusion
Systematic QOL evaluation is important in the management of advanced cancer patients
and their families. A practical method in the clinical setting is to first measure QOL using a
single global measure and then combine this with specific suitable multiple item instrument/s as
appropriate to needs. Whichever assessment tool is used, the most important aspect in providing
holistic care to our patients and their families is to identify and gain a deeper clarification
and understanding of those factors that are important to their QOL at different points in time,
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without intrusion of the health care professionals own personal values and views on QOL.
This will aid communication in the discussion of active treatment and symptom relief options
and their prioritization, as well as end of life care wishes, with the overall aim of improving QOL
for both patients and their families. Returning to Epicurus,
It is not great sums of money or a mass of possessions(..) which produce happiness and blessedness,
but rather freedom from pain and gentleness in our feelings and a disposition of soul which measures
out what is natural [3].
Acknowledgement
Eduardo Bruera is supported in part by National Institutes of Health grant numbers RO1NR
010162-01-A1, RO1CA122292-01, RO1CA124481-01.
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Chapter 13
Shifting the paradigm: from

complementary and alternative medicine
(CAM) to integrative oncology
Anne Leis, Stephen Sagar, Marja Verhoef, Lynda
Balneaves, Dugald Seely, Doreen Oneschuk1
The profound desire by many patients to control cancer using a holistic, patient-centred perspective has been an important impetus for the rising popularity of complementary and alternative
medicine (CAM) as an adjunct to biomedical conventional cancer treatments. More recently,
the focus has shifted from single CAM modalities for cancer management to a more comprehensive approach called integrative oncology, which is an evolving, evidence-based specialty that
uses CAM therapies in concert with biomedical cancer treatments to enhance its efficacy, improve
symptom control, alleviate patient distress and reduce suffering [1]. This chapter aims to explore
the rationale for increased CAM utilization by cancer patients and survivors from a historical and
ontological perspective, and to document the paradigm shift towards integrative oncology
as a pivotal part of a cancer control framework. The scientific foundation of CAM has been difficult to establish, partly due to a lack of fit between the mainstream reductionist and positivist
approach to health research, and because of the need to evaluate cancer control as a whole system
of prevention, treatment, and care. However, evidence supporting the safety and efficacy of select
CAM therapies is, slowly mounting through credible scientific enquiries, thus facilitating their
incorporation into cancer control. Finally, we provide support for integrative oncology as a
core component of cancer control, outline modalities to implement this vision, and discuss the
implications for education, practice, research, and policy.
What is complementary and alternative medicine (CAM)?

The way CAM is defined and which professions, practices, and therapies are included under this
label often depends on the point in time, the culture, and the socio-political forces at work within
a countrys health care system. Since the late 1980s, repeated attempts were made to develop discrete
1
Anne Leis, PhD, Professor and Dr. Louis Schulman Cancer Research Chair, Dept of Community Health
and Epidemiology, University of Saskatchewan, Saskatoon, Saskatchewan, Canada; Stephen Sagar, MBBS,
MRCP, FRCR, FRCPC, DABR, Radiation Oncologist, Juravinski Cancer Centre and Associate Professor,
Departments of Oncology and Medicine, McMaster University, Hamilton, Ontario, Canada; Marja
Verhoef, PhD, Professor and Canada Research Chair in Complementary Medicine, Department of
Community Health Sciences, University of Calgary, Alberta; Lynda Balneaves, RN, PhD, Associate
Professor and CIHR New Investigator, University of British Columbia School of Nursing, Vancouver,
British Columbia, Canada; Dugald Seely, ND, MSc, Research Director, Canadian College of Naturopathic
Medicine, Toronto, Ontario, Canada; Doreen Oneschuk, MD, CCFP, Division of Palliative Care Medicine,
Palliative Care Program, Grey Nuns Community Hospital, Edmonton, Alberta, Canada.
240
SHIFTING THE PARADIGM
definitions and categories that would accurately describe this diverse field of health care [24].
The term complementary and alternative medicine or CAM has been widely used during the
past 10 years[5]. The popular use of this term is due in part to its uptake by the well-established
National Institute of Health [NIH] National Centre for Complementary and Alternative Medicine
[NCCAM], which is the US governments lead agency for scientific research on CAM. According
to NCCAM, CAM refers to a group of diverse medical and health care systems, practices, and
products that are not presently considered to be part of conventional medicine. NCCAM defines
complementary medicine as comprised of therapies and practices that are used alongside conventional medicine whereas alternative medicine is defined as being used in place of conventional
medicine. CAM is further grouped by NCCAM into four domains to account for the wide diversity in therapies: (1) mind-body medicine, (2) biologically-based practices, (3) manipulative and
body-based practices, and (4) energy therapies. Religious observance and prayer are usually
excluded from the definition. Mind-body medicine includes those therapies that engage the ability of the mind to affect physiology and quality of life through sustained attention-focused techniques, or emotionally expressive and imaginative practices. Mind-body therapies include
modalities such as hypnosis, imagery, meditation, yoga, music, and art therapy. Biologicallybased therapies comprise a wide range of natural health products, vitamins and minerals,
nutraceuticals, herbal products, and other biological substances. Therapies which involve the
physical touching of an individuals body, such as massage or chiropractic techniques, are categorized as manipulative and body-based practices. Energy therapies are based on the conceptualization of the physiological body as being comprised of energy fields, which can be influenced
through various techniques that may not include touching. Cutting across all four domains is the
category called Whole Medical Systems. These represent comprehensive systems of theory and
practice that have developed prior to, or in parallel to, biomedicine. These systems usually have a
history of effectiveness ascertained through many years of observation within a specific cultural
context (e.g. traditional Chinese medicine, Ayurvedic medicine, and naturopathic medicine). At
the 2004 European Forum for Complementary and Alternative Medicine Promoting Integrated
Healthcare, CAM was identified as the preferred label and defined as a diverse range of autonomous healthcare practices used for health maintenance, health promotion, disease prevention
and for the treatment of ill-health [6]. More recently, the newly formed National Institute of
Complementary Medicine (NICM) in Australia adopted complementary medicine (CM) as an
inclusive term that incorporates Complementary Medicines and Complementary Therapies
(Modalities / Systems). The term complementary medicine is considered to be inclusive of historically used names such as alternative medicine, natural medicine, and traditional medicine.
CM is concerned with both the maintenance of wellness and the treatment of illness [7]. Over the
years, the list of what is considered CAM has been a moving target as those therapies proven to be
safe and effective tend to be integrated into conventional health care. Similarly, therapies considered to belong to conventional medicine may also vary depending on the paradigm and specialty
area in which a health professional is trained, and how conventional medicine is itself defined.[8]
For example, the increased emphasis on the potential impact of lifestyle behaviours, such as dietary changes, exercise, and sleep patterns, on cancer prevention and survivorship has broadened
the scope of both CAM and conventional medicine [9], and further blurs the boundaries among
different forms of medicine, thus impacting the scope of cancer control.
The relevance of CAM to cancer control

The interest in CAM in the Western world primarily focuses on CAM as an adjunct to
mainstream oncology treatments rather than as an alternative to conventional medicine.
THE RELEVANCE OF CAM TO CANCER CONTROL
Notwithstanding the difficulties in defining CAM and accurately measuring CAM use,
population-based prevalence studies suggest that at least one-third of patients in developed
countries use CAM therapies during their cancer experience [10,11] and that CAM utilization
is increasing within specific cancer populations [12,13]. To enhance cancer control strategies it is
important to know the types of CAM cancer patients use, who is using CAM in terms of sociodemographic and personality characteristics, as well as reasons for use.
CAM modalities commonly used by cancer patients and survivors

According to a number of surveys conducted in many countries over the past years, the most
popular modalities for cancer patients are natural health products, supplements, and vitamins
followed by mind-body therapies and massage therapy [14]. These represent thousands of
products and therapies with varying levels of regulations in the western world, and for the most
part with no conclusive evidence for cancer [15,16]. A few reports of interactions with conventional oncology treatments have been published [17]. Mind-body approaches and body manipulation are often perceived as supportive therapies that may be helpful and innocuous. Rarely
will oncology patients use a single modality; rather they mostly combine therapies to manage
their cancer [18].
CAM users
CAM use is particularly common among younger [19], well-educated women [20,21] as well as
within specific cancer populations (i.e. breast and prostate cancer) [22]. Moreover a trend is
observed towards increased CAM use among younger cancer patients who wish to play an active
role in the healing process and are less satisfied with treatment options [23,24]. CAM utilization
is also influenced by belonging to an ethnic and cultural minority [25]. According to Sirois, psychological factors such as need perception, desire for control, motivation, and health beliefs
also drive CAM use [26,27]. However no correlation between depression, anxiety, and the use of
CAM was found [28]. Rather, CAM use has been described as a sign of active coping behaviour
and can change as a function of the cancer journey [29].
Why are people using CAM?

. . . you just dont know . . . I thought, Ive gotta increase my odds. I have to do it all. I have to do
complementary and conventional [treatment]
Patients quote
Studies exploring the reasons for cancer patients use of CAM have repeatedly shown that patients
are often pushed towards CAM therapies and practitioners because of dissatisfaction with the
quality of care provided within mainstream health care [3032]. Limited time available during
consultations, lack of respect for patients beliefs and values, failure to involve patients in treatment decisions, as well as, for some individuals, poor treatment outcomes, have been cited as
factors that are associated with cancer patients seeking alternative forms of health care [33].
Cancer patients are attracted towards integrating conventional and CAM treatments, as this
allows cancer management to be more person-centred and more supportive of the bodys ability
to heal itself [3438]. For many individuals, CAM therapies provide them with a sense of control
over their illness as well as the opportunity to be a more active participant in their overall cancer
care. Patients also prefer treatments that concur with their belief systems, such as the growing
belief in the role of the mind in cancer [39]. Interest in CAM therapies shifts across the cancer
trajectory, with individuals facing more advanced disease and limited treatment options being
241
242
more likely to report the use of CAM [40]. Indeed, perceived risk of recurrence and advanced
disease were shown to be strongly associated with CAM use [41]. Such treatment decisions may
be motivated by the desire to maintain hope when faced with a poor prognosis as well as the need
to achieve healing when cure is not possible. However, CAM use is not only a matter of balancing
push and pull factors. Making such decisions is a complex process that is not linear and depends
on the individual persons context [42].
Costs associated with CAM

Insurance coverage for CAM interventions varies between and within countries. Generally,
patients must pay from their own financial resources regardless of the evidence-based status
of the modality, and the out of pocket expenditures are most often underestimated. For CAM
modalities, the reimbursed amount is generally modest and often does not include all costs
related to CAM care [43]. Unfortunately when faced with a lack of universal healthcare in countries including the United States, some CAM therapies may become the first line of action because
they represent the more affordable supportive care option.
Historical context and societal trends

The increasing use of CAM in Western society is part of important societal and cultural trends.
With the publication of the Flexner Report [44] in 1910, a new era promoting scientific rigor,
analytic reasoning, and sophisticated technology was born. This report was designed to address
the lack of standards in medical education common in many schools in the United States, which
were teaching various types of medicine including homeopathy, chiropractic, and osteopathic
medicine [45]. Much needed reforms in the standards, organization, and curricula of North
American medical schools took place with the effect of precipitating the closure of training programmes not focused on biological, disease-oriented models (e.g. homeopathy and naturopathy).
At the same time, research became more rigorous and promoted a reductionist approach to elucidate causal relationships. Considered unscientific many CAM modalities slowly disappeared
as health care options. Despite some dissident voices such as Sir William Oslers, a technologyfocused, reductionist, and disease-oriented medical system came to rule the day with anything
resembling CAM being labelled quackery, a term with powerful negative connotations.
A shift towards the bio-psychosocial model

As a reaction to the era of modernism characterized by beliefs in the existence of objective truth,
causality, and impartial observation, the shift towards post-modernism opened the door to
a medicine less reliant on science and technology. Individuality, complexity, and the subjectivity
of personal experience were rediscovered [46,47]. Postmodernism was one of the many emerging
movements in the 1970s that contributed to scepticism about the ability of a reductionist form of
biomedicine to resolve all contemporary health care problems, and this phenomenon led to widespread discussions about the practice and role of medicine in our society and culture. An important marker of this shift was the articulation of the bio-psychosocial model of health and disease,
which was viewed as more comprehensive than the biomedical model [48]. In addition, the shift
towards globalization [49] meant faster access to information, increased sensitivity to cultural
practices, and the rediscovery of healing paradigms and therapies typically excluded from health
care offered within Western societies. After an absence of approximately 75 years, therapies now
labelled under the umbrella term of CAM, slowly reappeared on the public health scene.
In this changing climate, the field of psycho-oncology emerged as a means to address the unmet
social, emotional, and psychological needs of cancer patients [50]. Over the past 35 years psychooncology has matured and is now a key oncology sub-specialty area that aims to understand
HISTORICAL CONTEXT AND SOCIETAL TRENDS
and address the social, psychological, emotional, spiritual, and functional aspects of cancer from
prevention through bereavement. Many large cancer centres throughout Western Europe, the
United States, Canada, and Australia started to dedicate some funds to psycho-oncology clinical
resources in the form of patient counselling, psycho-education, or stress management. Despite
the mounting evidence base, psycho-oncology remains often underfunded because it tends not to
be considered as a core cancer control discipline.
Another development, not specific to cancer was the increasing number of patients using
CAM approaches. This resulted in public pressure on the United States Congress to pass legislation to establish the Office of Alternative Medicine (OAM) at the National Institutes of Health in
1992, with the mandate to launch a research programme to develop an evidence base for CAM.
In 1999, the OAM became the National Centre for CAM (NCCAM) and has become a hallmark
of the growing public and professional acceptance of CAM. Around the same time, but initially as
a separate movement, integrative oncology slowly began to emerge as an approach and later as a
discipline, which combines evidence-based conventional and CAM cancer treatments. The first
CAM-oriented support centres opened in North America and Europe (examples include the
Commonweal Cancer Help Programme in the United States [51] and the Bristol Cancer Help
Centre in the United Kingdom, now called the Penny Brohn Cancer Care [52]). Originally perceived as offering controversial therapies of questionable efficacy to a limited number of cancer
patients, these programmes first struggled to find support within mainstream cancer care and
later gained momentum with the re-emergence of philosophical movements in health care
towards holism, self-care, and patient-centred care [53]. Such institutions have led to a significant
body of evidence in the past 20 years that supports the possible efficacy of select CAM interventions and the potential synergism of a more complex whole systems approach to cancer management. This movement has encouraged the rediscovery of a more humanistic and comprehensive
approach to cancer control and the paradigm shift towards integrative oncology.
Cancer patients as partners in cancer control

These shifts also resulted in cancer patients wanting to be more active partners in all aspects of
cancer treatment decision making. Today many cancer patients desire treatment options and
outcomes that go beyond the biological and physical domains. Patients often search for a profound healing experience from their care that includes: the restoration of harmony, balance and
optimal functioning at all levels of a person(p. 3) [54]. Beyond physical treatments, the psychological, social, spiritual, and quality of life domains are important to people with cancer and
require a whole-person approach to cancer control. As more cancer patients choose to incorporate CAM therapies into their cancer management, oncology health professionals and institutions
are increasingly pressured to acknowledge and examine the potential effects of CAM, both positive and negative, on cancer control outcomes [55]. The literature further shows that the integration of CAM therapies is significantly improving quality of life as well as disease and
patient-centred outcomes.[56,57] However, patients need support around CAM information
and decision-support services to meet their healing goals. The demand for person-centred cancer
control requires a change of culture within existing cancer institution and providers, as more
explicit knowledge and discussion of CAM therapies are expected. As described in a 2005 Institute
of Medicine Report [58], the holistic person-centred approach should be seen within an ecological model of cancer control, as it assumes that health and well being are affected by interaction
among multiple determinants, including biology, behaviour, and the environment (p. 211), thus
extending the holistic integrative cancer control movement to the system level. For example,
in some major cancer institutions, truly integrative oncology practice models are being implemented, and evaluation of these models will have to take into account and measure the complex
interactions within the cancer control system.
243
244
Shifts in health policies, regulations, and scopes of practice

With the increasing use and popularity of CAM, some conventional health professionals are
beginning to express an interest in incorporating CAM into their own practice, either by offering
select CAM therapies or by providing patients with information, treatment recommendations, or
referrals to CAM practitioners. Such practices can be described as occurring at the borderland
of medicine, ethics, public policy, and law [59] and require regulations and policies for conventional health care providers, for CAM practitioners as well as for product regulations. The policies
and regulations across Western countries vary widely and even within countries, states, and provinces there are substantial differences in how CAM is regulated. In addition, health care professionals are often unaware of local professional guidelines or position statements, policies, and
regulations regarding how CAM can be addressed within their discipline. In several countries,
including Canada and the United States, policies and regulations are only beginning to be developed and vary widely, as compared to some European countries in which there is often a longer
history of specific CAM professions.
As a result, the scope of practice, regulatory and disciplinary structure, as well as training of
select CAM practitioners, may vary considerably on a regional basis. Other challenges, such as
cost constraints in many Western health care systems and diffuse boundaries between CAM and
conventional health professions and scopes of practices, have made further regulation of CAM
practitioners difficult [60]. The dominance of evidence-based practice within health care may
further slow the progression of statutory regulation of CAM disciplines as currently unregulated
CAM professionals struggle to find sufficient evidence to support the efficacy and safety of the
care they provide [61].
Most problematic has been the regulation of natural health products, which remain among the
most frequently used types of CAM in cancer populations. Efforts have been made by the federal
governments of Canada and the United States to ensure that over-the-counter natural health
products are safe, appropriately labelled according to content, dose, and intended use, and have
been produced using good manufacturing practices. For example, in Canada, the Natural Health
Product Directorate (NHPD) of Health Canada (http://www.hc-sc.gc.ca/dhp-mps/prodnatur/
index-eng.php) was established with the task of developing a regulatory framework that would
oversee the licensing of all natural health products sold [60,62].
The evidence base for CAM

Both safety and efficacy of individual complementary therapies need to be demonstrated before
determining their suitability for integration into mainstream care. For the past 15 years, the
evidence supporting CAM interventions has been steadily increasing. Following the hierarchy
of evidence based on study design and stringent methodological requirements, CAM evidencebased clinical practice guidelines have recently been proposed to support this safe integration.
[63]. For example, within oncology populations, the benefit of mind-body medicine, the physiological basis for acupuncture, the role of touch, and the importance of appropriate exercise and
nutrition have been shown [64]. However the evidence for efficacy and safety of botanical agents
and other natural health products remains limited despite a number of promising laboratory
investigations.
Space limitation within this chapter prevents us from presenting an exhaustive list of CAM
clinical interventions that are beneficial to cancer patients, and generally safe. Only examples
of recent trials and systematic reviews of commonly used CAM treatments are provided in
Table 13.1 to illustrate this rapidly growing field. Details are covered in many current publications
and textbooks [6569].
THE EVIDENCE BASE FOR CAM
Table 13.1 Evidence-based benefits of complementary and alternative medicine (CAM) interventions
CAM intervention
Evidence
Mind-Body
Mind-body medicine includes those therapies that engage the ability of the mind to affect physiology
and quality of life through sustained attention-focused techniques or emotionally expressive and imaginative practices. Mind-body therapies include modalities such as hypnosis, imagery, meditation, yoga,
music, and art therapy.
Meditation
Significant improvement in mood disturbance and symptoms of stress, as well

as improvement in overall quality of life and sleep quality [63]
Hypnosis
Relaxation and
guided imagery
Mindfulness-based
stress reduction
(MBSR)
Expressive therapies:
music, art, and
dance [91]
Reduces pain sensation in breast cancer patients receiving group support [70]
Improves fatigue [71]
Reduces anxiety and stress [72]
Effective for mucositis pain [72, 73]
Vomiting and nausea reduction [73]
Post-surgery pain and distress reduction, reduced anxiety, and distress [63]
Alleviate acute and chronic cancer pain conditions in children [74]. Alleviates
nausea and vomiting associated with chemotherapy [74]
Reduces pain and analgesic use, diminishes analgesic side effects [72]
Decreases nausea, vomiting, and severity of fatigue [73]
Decreases anxiety and distress significantly, reduces tension, depression,
anger, and fatigue. Improves sleep induction [63]
Decreases levels of stress and increases immune functioning, decreases
pain [75]
Decreases anxiety, improves mood, and less suppression of emotions [76]
Alters putative anti-cancer host defences during and after multimodality
therapy [77]
Helpful for: pain control [75,7881], recovery from cancer surgery [82],
decreasing nausea and vomiting associated with chemotherapy [77, 82, 83]
and the distress of radiation [84], facilitating emotional expression, and
enhancing quality of life [80, 85] as well as increasing the production and
functioning of immune cells, including T cells and natural killer cells [77, 86]
Decreases mood disturbances and stress symptoms [87]
Reduces cancer-related fatigue and increases vitality [88]
Improves mood, sleep quality, and reduces stress [89]
Improves fatigue [71]
Decreases mood disturbances and stress as well as shifts immune profiles
associated with decreased depressive symptoms [74]
Altered cortisol and immune patternsconsistent with less stress and mood
disturbance as well as enhanced quality of life and decreased symptoms of
stress [90]
Music therapy: decreases incidence of nausea and vomiting [73] and
reduces mood disturbance [70]; reduces pain-intensity levels and opioid
requirements [92]
Effective in addressing physical, emotional, and spiritual needs of palliative care
patients. Reduces anxiety and improves quality of life of terminally ill patients.
Also reduces pain, tiredness, and drowsiness in palliative care patients [93]
(Continued)
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246
Table 13.1 (Continued) Evidence-based benefits of complementary and alternative medicine (CAM)
interventions
CAM intervention
Yoga
Evidence
Mindfulness-based art therapy decreases stress-based arousal, reduces

mood disturbance, is used as a coping strategy, and a way to improve
quality of life [91]
Better social functioning, enhanced emotional well being, and mood [94]
Yoga may be a viable therapeutic intervention for improving cancer-related
fatigue [88]
Tibetan yoga lowers sleep disturbance, but does not significantly impact
fatigue [71]
Improves sleep quality, decreases sleep disturbances [63]
Tai Chi
Women with breast cancer practising tai chi have experienced significant
improvements in psychological and physiological symptoms compared to
a control group [95, 96]
Manipulative and body-based

Therapies which involve the application of controlled force to a joint or movement of one or more parts
of the body in order to restore or enhance health such as massage or chiropractic techniques.
Therapeutic
massage [91]
Manipulation of the
soft tissues of the body
using the hands for the
purpose of producing
positive effects on the
vascular, muscular, and
nervous systems of the
body [97]
Reduction of pain and anxiety [72, 98]

Immediate short term pain relief in men [70]
Enhances mood [72]
Decreases fatigue, symptoms of distress, nausea, and state anxiety [71]
Reduce anxiety, mood disturbances, and chronic pain as well as fatigue and
distress [63, 99]
Aromatherapy massage helps short-term management of mild-to-moderate
anxiety and depression in patients with cancer [100]
Biologically based
Biologically-based therapies comprise the wide range of natural health products, vitamins and minerals,
nutraceuticals, herbal products, and other biological substances. The most commonly used herbs and
vitamins among cancer patients include echinacea, ginko, garlic, green tea, shark cartilage, grape seed, milk
thistle, melatonin, fish oil, ginger, saw palmetto, St. Johns wort, black cohosh, cranberry, and valerian. [101].
Vitamin C, E, and
coenzyme Q10
St. Johns wort

(Hypericum
perforatum)
Inconclusive results for the efficacy of antioxidant supplementation such as

vitamins C and E, and coenzyme Q10 to prevent or treat cancer [102]
In cases where interactions are highly suspected, Seely et al. propose a
strategy to avoid a negative interaction or even possibly instigate a
synergistic effect. [103]
It should be completely avoided during chemotherapeutic regimes as
St. Johns wort was found to be an active inducer of the CYP3A4 enzyme [104]
Energy therapies
Energy therapies are based on the conceptualization of the physiological body as being comprised of
energy fields, which can be influenced through various techniques that may not include touching. These
include therapies such as Reiki and Johrei, both of Japanese origin, Qi gong, a Chinese practice, and
healing touch. Energy therapies are also an integral part of traditional Chinese medicine.
NEW PARADIGMS FOR CANCER CONTROL
Table 13.1 (Continued) Evidence-based benefits of complementary and alternative medicine (CAM)
interventions
CAM intervention
Evidence
Acupuncture
Insertion and manipulation of needles into the
skin at precise locations
[traditionally meridians
of energy; these are
now known to have
neurophysiological
correlates] to treat
various diseases or
symptoms and improve
health [30, 96]
Effective for reducing the incidence of chemotherapy-induced nausea and

vomiting [105], reduces chemotherapy-related neutropenia [106], cancer
fatigue [71,107], and radiation-induced xerostomia [108,109]
Contributes to the control of pain (acute and chronic) and other side effects
as well as helps to reduce the levels of pain medication required [63,110];
appears to be less and inconsistently effective for cancer pain [70,96]
Shown to influence the production of endogenous opioid neurotransmitters
and may reduce pre-operative anxiety, but there is no report of effect on general anxiety [72]
Acupressure may have some benefit in reducing delayed chemotherapyinduced nausea and vomiting in women with breast cancer [111]
Selection based on randomized controlled trials (RCTs) and systematic reviews in recent years
In closing this section it is important to realize that CAM interventions do not always
lend themselves well to assessment by means of a RCT. CAM interventions are often complex as
they can include multiple components and are often administered in an individualized manner,
taking into account the patient-provider relationship and the context of the treatment, including
the patients characteristics and preferences. Evaluating such interventions using methodology
that requires standardization of the treatment, randomization, control of placebo effects,
and often blinding may therefore lead to results that do not generally apply to patients using
CAM interventions. This does not mean that CAM research should not be systematic and rigorous; however, it signals that more complex methods than RCTs may be needed for some CAM
interventions [112].
The perspective that scientific evidence obtained by means of RCTs may be limited is not new;
in fact Sackett, one of the leaders in promoting evidence-based medicine [EBM], has also pointed
out that evidence is not solely established from research but also includes clinical expertise
and patient values [113]. In combination, scientific evidence, clinical expertise, and respect
for patient values are key components of optimal, evidence-based, whole-person cancer care. The
question therefore is first how is best evidence determined and is it really the best evidence?
Innovative methodologies, such as mixed methods [114] and pragmatic trials, include multimodal, non-linear quantitative and qualitative investigative approaches and are more suitable to
address the true potential of integrative care and cancer control. These approaches consider the
researcher, the participant, and the context as an integral part of both the intervention and the
outcome measurements, which is needed to develop a rich evidence base more reflective of holistic medicine [112].
New paradigms for cancer control

Integrative oncology is an approach that crosses the conventional categories of cancer control
from prevention [115,116], through treatment [32], supportive care [117], rehabilitation [118],
survivorship [119,120], and end-of-life care [121]. From this perspective, it has much in common
with current models of palliative care, that emphasize that whole-person care should be
introduced early in the care plan, rather than during the terminal phase. Integrative oncology
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248
emphasizes a whole person and lifestyle approach to cancer care, evaluating complex systems, and
collaborative pathways of care, in contrast to single interventions alone.
A new paradigm for cancer control research

Cancer control including care is much more than a constellation of separate treatments. Wholeperson care includes the complex interactions of the intervention placed within the patients
personal context, which includes social relationships, expectations and beliefs, activities, and
behaviours. These contextual elements develop in an ongoing process related to the patients life
situation, including social, cultural, economic, and political factors [122]. Whole-person cancer
care, inherently individualized, suggests that randomized controlled trials (RCT) are ill-suited to
capture the complexity of whole-person interventions. For example, such uniquely tailored
patient-management challenges that would be expected of a standardized intervention, and the
mere randomization may impose choices on patients and practitioners that they are not prepared
to follow. Moreover, blinding and placebo control are usually impossible to achieve. In addition,
RCTs typically exclude potentially important and informative qualitative and observational data
about the use and benefits of an intervention in real-world settings. Ideally quantitative research
is complemented by qualitative research to understand patients experiences, motives, and behaviours.
Whole person cancer care is, in fact, a system of cancer control which is composed of interconnected parts that as a whole exhibit one or more emergent properties not obvious from the properties of the individual parts [112,123]. In addition, systems adapt to change. In order to study
such systems, programmes of research are needed using various methodologies. Aickin emphasized the need to focus on the earlier stages (Early Phase Research) to advance understanding of
the role of CAM and integrative medicine, rather than prematurely conducting RCTs [124].
Such a programme may roughly be divided into five phases: [124]
1 The identification of underlying assumptions of cancer control, for example whole
person care.
2 Careful exploration and description of all treatment and care, as well as its process and
context. This also includes identifying patterns of treatment/care between patients and
settings.
3 Identification of the intended and unintended outcomes.
4 Developing testable explanations of observed processes, contexts, and outcomes (theoretical
models).
5 Testing these explanations, using RCTs or modifications of such designs.
A new paradigm in oncology health care professionals education

Many patients expect their conventional health care providers to discuss the safety and evidence
for complementary therapies and to evaluate their options [125,126]. However, research suggests
that most health care professionals (e.g. physicians, nurses, and pharmacists) do not have sufficient knowledge about CAM to confidently advise their patients [127130]. At the same time,
there is widespread interest on the part of educators and students to incorporate CAM content
into conventional education programmes [131]. In an editorial published in Academic Medicine
titled Is There Wheat among the Chaff?, Arthur Grollman empathically concluded that teaching
about CAM is important in training competent physicians [132]. In a Canadian survey that
assessed first-year medical students attitudes, knowledge, and experiences of CAM, 52% stated
that they had used CAM and 84% wanted further education [133]. Moreover, the undergraduate
NEW PARADIGMS FOR CANCER CONTROL
deans of Canadian medical schools suggested that medical school curricula should include evidence-based CAM [134]. It is especially important to begin teaching about CAM early in the
undergraduate years, as it has been noted that, as conventional medical training proceeds, medical students increase their scepticism about CAM [135]. Medical students should be effectively
taught CAM using the principles of evidence-based medicine [136,137].
CAM curriculum materials and teaching approaches have been developed in medical schools in
several western countries like the United States [138], Canada [139], and the United Kingdom
[140]. The Consortium of Academic Health Centers for Integrative Medicine includes over
40 highly esteemed academic medical centres in the United States and Canada [141]. Its mission
is to help transform health care through rigorous scientific studies, new models of clinical care,
and innovative educational programmes that integrate biomedicine, the complexity of human
beings, the intrinsic nature of healing, and the rich diversity of therapeutic systems. Its education
working group facilitates the incorporation of teaching on integrative medicine into all levels of
medical education. The CAM in Undergraduate Medical Education (UME) project is a Canadian
medical education initiative established in 2003 by a team of conventional and CAM educators
[142]. Its main objective is to help medical school instructors impart to students the knowledge,
skills, and attitudes to discuss CAM with patients in an informed and non-judgmental manner.
Both initiatives developed early on a set of competencies for undergraduate medical education
that can serve as a template for schools across North America and elsewhere as they move to
develop a curriculum in this area [143].
Several initiatives are also underway to develop training programmes for nursing and pharmacy students regarding CAM. Health professionals such as nurses and psychosocial workers
counsel patients on integrative treatment programmes. They serve as advocates for patients, providing unbiased guidance on CAM, self-care, mind-body techniques, end-of-life planning, and
spiritual connectivity. With their help, patients become knowledgeable about available resources
and are empowered to cope with their challenges. This role has been variously labelled Navigator,
Pathfinder, or Cancer Guide. Special training in integrative care counselling, covering a wide
scope of practice, is provided by postgraduate courses, such as CancerGuides [144].
At the postgraduate level, the Society for Integrative Oncology is a non-profit, multidisciplinary organization founded in 2003 for health professionals committed to the study and
application of complementary therapies and botanicals for cancer patients[1]. It provides a
convenient forum for presentation, discussion, and peer review of evidence-based research and
treatment modalities in the discipline of integrative medicine for the management of cancer
patients, organizes an annual research and education conference, publishes a peer reviewed
journal, and issues evidence-based practice guidelines [65].
Following the integration of CAM modalities into cancer control, it is equally important that
the various complementary therapy practitioners are trained to provide evidence-based CAM
information to cancer patients and maintain standards in cancer treatment programmes. For
example, massage therapy is increasingly used in the supportive care programmes of many cancer
centres. Indications, contraindications, communication, informed consent, and record keeping
are mandatory standards that are being taught to massage therapists who participate in hospital
programmes [145,146].
Redefining comprehensive cancer care within an integrative

cancer control system
Over the past years the National Cancer Institute (NCI) in the United States has actively promoted the development of comprehensive cancer centres characterized by scientific excellence
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250
and the capability to integrate a diversity of practices and research approaches to address the
burden of cancer. As more evidence became available on the potential of CAM to improve symptom control, increase quality of life, provide more rapid and effective rehabilitation, enhance
cancer control with less adverse effects, and consider consumers cultural values, these Cancer
Centres have established integrative oncology services and research programmes [67]. These
centres are a major source for understanding the nature of cancer and for developing more effective approaches to cancer prevention, diagnosis, and care. They provide information about the
latest research developments to patients and their families, educate health-care professionals and
the public, and reach out to under-served populations.
A comprehensive cancer programme should integrate surgery, chemotherapy, radiotherapy,
and molecular targeted therapies with a wide variety of meaningful, evidence-based interventions
that can improve cancer control such as psycho-spiritual support, psychological therapies, physical therapies, acupuncture, and an investigative programme of promising botanical agents and
other natural health products. A comprehensive cancer control system may result in economic
advantages through lifestyle modification and prevention, more rapid rehabilitation, and the
teaching of positive lifestyle skills to empower change. International collaboration between North
American, European, and Asian universities, along with pharmaceutical companies, is encouraging the development of multi-targeted therapies from traditional herbs [147150].
The practice of integrative oncology is already beginning to be established within the management systems of leading cancer control institutions [151]. Within cancer care settings in North
America and the European Union, integrative cancer care services exist within prominent institutions, such as Memorial-Sloan Kettering Cancer Centre, the M.D. Anderson Cancer Centre in the
United States, and the Royal Marsden in the United Kingdom. These centres offer inpatient and
outpatient clinical care including CAM and are also involved in research and education [152]. In
December 2004 in Brussels, doctors, practitioners, patients, and stakeholder organizations of the
CAM community from across the European Union (EU) joined forces to promote the integration
of evidence-based CAM in healthcare and agreed to become the European Forum for
Complementary and Alternative Medicine [EFCAM]. Their aim was to create a permanent
forum for the exchange of views and information and to act as a single point of reference for the
EU institutions on policy and regulatory issues of relevance for CAM. Finally, at the World Health
Organization (WHO) level, the November 2008 Beijing Declaration was adopted to promote the
safe and effective use of traditional medicine (TM), and ask WHO members and other stakeholders to integrate TM/CAM into national health systems [153]. Overall, the future of cancer control
lies in the successful integrative approach of CAM and mainstream medicine in collaboration
with all health care providers and based on a common understanding of the need for efficacy,
safety, and cost effectiveness.
Conclusion
The development of integrative oncology has arisen from both a place of caution regarding the
potentially harmful effects that may be associated with CAM as well as the desire on the part of
CAM practitioners to be recognized as credible and legitimate health professionals with comprehensive standards and scopes of practice. However, this could only develop in a context in which
patients needs for more comprehensive cancer control were strongly expressed, identified, and
recognized. Increased research on the efficacy and safety of CAM and its impact on quality of life
have contributed to this movement as well. Whole person cancer care as encompassed by the
term integrative oncology is a system of cancer control. It is an evolutionary system composed
of interconnected parts. As a whole, these parts exhibit emergent properties not obvious from the
REFERENCES
properties of the individual parts. New programmes for cancer control will be complex and
comprehensive, resulting in synergistic improvements in health outcomes. More complex
research methodologies, such as the mixed methods approach, will be required to measure these
outcomes and to reflect the complexities of real-life situations. Although more research is
required, the current indicators suggest that integrative oncology will enhance the quality of life
and the rehabilitation of patients, and contribute to preventing further cancers in survivors and
their families within a coherent public health programme of cancer control [9]. Ideally, future
strategies will include introducing these interventions earlier, in order to enhance the primary
prevention of cancer, and the incorporation of long-term economic analyses to better substantiate the potential societal benefits achievable from implementing integrative oncology.
Acknowledgment
The authors are members of the Cancer and CAM Research Team of the Sociobehavioural Cancer
Research Network, Centre for Behavioural Research and Program Evaluation. The team has
benefited from the financial support of the National Cancer Institute of Canada, with funds from
the Canadian Cancer Society. We wish to extend our thanks to Ms Julia Bidonde, MSc, Research
Officer, for her competent assistance to the project.
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Chapter 14
Patient-centred supportive and

palliative care
Genevieve Thompson, Carla Ens, Harvey Chochinov1
Born out of the desire to alleviate the suffering of cancer patients [1], Dame Cicely Saunders and
her colleagues developed the modern hospice movement in the United Kingdom in 1967. Since
then, palliative care has been adopted throughout the world as a humanistic approach to patient
care. Within the empirical literature, authors definitions of palliative care provide insight into
its core components. The widely applied definition by the World Health Organization (WHO)
proposes that palliative care gives relief from pain and other distressing symptoms, affirms life,
and views death as normal, neither hastens nor postpones death; integrates both spiritual and
psychological aspects into care, offers support systems to patients, supports families during illness
and bereavement, applies a multi-disciplinary team approach, enhances quality of life, and is
applied over the entire course of the illness [2]. A generally accepted view of palliative care is that
it is the active total care of patients whose disease is not responsive to curative treatment.
It encompasses all treatment modalities that are aimed at enhancing quality of life rather than
curing disease [3]. Within the cancer context, clinical oncology may incorporate two distinct
aspects when defining palliative care: on the one hand, palliative care is about pain control and
symptom management and, on the other hand, it involves non-curative tumour-directed treatments [4]. Whatever the wording, the definitions of palliative care have one constant emphasis:
consideration for the patients quality of life.
A similar emphasis is noted in the definition of cancer control as a public health programme
designed to reduce the number of cancer cases and deaths and improve quality of life of cancer
patients [5]. The cancer control model purports to include the spectrum of care from primary
prevention, early diagnosis, optimal treatment, and supportive and palliative care [6]; it can be
viewed as a four member team, with each player making critical contributions to patient care.
Theoretically, this population-based cancer control team appears seamless and equitable. After
all, each player is concerned with a patients overall quality of life during his or her experiences
with cancer. However, it is unclear from the empirical literature if this team is actually cohesive
or if the palliative care player is viewed as the poor cousin, left to fend for him or herself
as resources become available. Was the notion of the cancer control team, consisting of players
primary prevention, early diagnosis, curative treatment, and palliative care, formed out of
Genevieve N. Thompson, RN, PhD, Manitoba Palliative Care Research Unit, CancerCare Manitoba,
Research Associate, Faculty of Nursing, University of Manitoba, Winnipeg, Manitoba, Canada; Carla D.L.
Ens, MSc, PhD, Department of Community Health Sciences, University of Manitoba, Canada; and Harvey
M.Chochinov, MD, PhD, FRSC, Distinguished Professor and Canada Research Chair in Palliative Care,
Department of Psychiatry, University of Manitoba, Director, Manitoba Palliative Care Research Unit,
CancerCare Manitoba, Winnipeg, Manitoba, Canada.
260
PATIENT-CENTRED SUPPORTIVE AND PALLIATIVE CARE
convenience, proposed to satisfy practitioners with a more psychosocial bent, or one of necessity,
aimed to meet the defined needs of patients, families, and caregivers?
Global cancer statistics indicate that cancer incidence and mortality are on the rise [7,8];
in 2002, over 7.5 million people worldwide died of cancer [9]. With about half of the worlds
new cancer cases occurring in developing countries, and approximately 80 per cent of these
cancer patients presenting at an incurable stage of the disease, palliative care cannot be considered
optional [10]. Factors such as cancer survival rates, an ageing population, and the importance of
alleviating suffering during illness, contribute to the necessity for palliative care as an integral and
critical component of the cancer control team [11]. The purpose of this chapter is to expand on
the role of palliative care within the framework of cancer control. In addition, the public health
approach outlined by the WHO, including appropriate policy, adequate drug availability, education, and palliative care delivery at all levels of health care, will be discussed. Finally, the challenges
in adapting these principles into high and low resource settings will be described.
Role of palliative care in cancer control

Consideration must be given to the nature and description of palliative care within the cancer
control model. The following section describes the role of palliative care within the spectrum of
cancer care. Furthermore, it expands on and defines the different types of palliative care within
health care today.
What is cancer control?

To address the growing burden of cancer worldwide, the WHO has pioneered initiatives and policies aimed at reducing the incidence and mortality of cancer through primary prevention, early
detection, and application of anticancer treatment strategies [12]. Despite significant advances in
anticancer treatment strategies, an estimated 60 per cent of cancer patients will experience significant pain and worldwide, two-thirds will not be cured [13], thus placing significant numbers of
persons at risk of suffering from physical, psychological, social, spiritual and existential distress.
The prevention of suffering has become recognized as an integral aspect of cancer control. The
WHO, as seen in Figure 14.1, has advocated that palliative care is a critical component of national
cancer control programmes [14]. This model has been adopted worldwide as a framework guiding
the development of comprehensive cancer control strategies [6,15].
Thus cancer control can be defined as an overall strategy with four goals: (i) preventing disease;
(ii) identifying early disease; (iii) treating to cure, rehabilitate, or prolong the lives of patients with
invasive cancer; and (iv) prevention of suffering through the anticipation, early detection, and
palliation of physical, psychosocial, existential/spiritual, and social concerns of patients [16]. One
of the challenges facing the incorporation of palliative care into a national cancer control strategy
is defining what is meant by palliative care.
Primary prevention
Early detection
Cancer Control Strategy

Curative treatment
Palliative care
Fig. 14.1 The four integrated components of a comprehensive cancer control strategy
Source: From Stjernsward et al. (2007) [6].
ROLE OF PALLIATIVE CARE IN CANCER CONTROL
What is palliative care?

Palliative care is an approach to care that improves the quality of life of patients and their families
facing the problems associated with life-threatening illness, through the prevention and relief
of suffering by means of early identification and impeccable assessment and treatment of pain,
and other physical, psychosocial, and spiritual problems[2]. The philosophy of palliative care
espouses: (a) a patient and family focus; (b) active management of distressing symptoms;
(c) total, individualized care of the patient; (d) an interdisciplinary team approach; (e) integration of the psychological and spiritual aspects of care; (f) supporting the family throughout the
patients illness and in their own bereavement; and (g) offering support to the patient so they may
live as actively as possible until death [17,18]. Other tenets of palliative care include an open
and positive attitude towards dying and death; viewing illness not as an isolated aberration in
physiology, but rather in terms of the suffering it may cause [19].
Types of palliative care

As a pillar in any cancer control programme, palliative care is not limited to the final months of
a patients life [12]. Rather, it is vital to consider different modalities and intensities of care based
on the unique needs of the individual and where along the illness trajectory they may be. In this
regard, it is important to distinguish between a palliative approach, specialized palliative care,
supportive care, hospice care, and end-of-life or terminal care [7,20].
A palliative approach
The principles of a palliative care approach are integral and intrinsic to all good clinical care,
regardless of the nature or stage of the patients illness [21]. In this manner, a patient undergoing
active treatment for their disease may concurrently benefit from a palliative approach. The overall
goal of a palliative approach is to improve the quality of life of the individual and reduce suffering,
through improved comfort and level of function.
Specialist palliative care

Specialist palliative care services augment the palliative care approach, through targeted interventions delivered by multidisciplinary professionals with palliative care expertise. In this regard, the
services provided by a specialist palliative care team serve as a resource to the primary care professionals [22]. When the care needs of the patient extend beyond the practitioners level of expertise
or when the patient is experiencing multiple or complex care needs, patients benefit from a referral to a palliative care specialist [21,23]. It is generally agreed that a small minority of patients will
require specialized palliative care services during the course of their illness [20].
Supportive care
The phrase supportive care emerged from chemotherapy clinical trial studies, describing the
care provided to the comparison group; since then the term has become more frequent in the
oncology literature to describe non-chemotherapeutic palliation [24,25]. Supportive care is not
synonymous with palliative care but palliative care is an essential part of supportive care [26]. The
objectives of supportive care are to manage the complications of cancer, cancer-related physical
and psychological distress, and to alleviate the toxicities induced by anticancer treatments [27].
Hospice care
In many countries, hospice is the term used to define a place of care. In addition to being a
place of care, hospice denotes a broader philosophy based on the principles of palliative care.
Hospices are often funded by charities and act as specialized palliative care units, often focusing
261
262
on end-of-life care [28] or delivering specialized services to patients in the community (e.g. home
care, nursing homes). In countries with fewer resources, hospices are the primary source for
palliative care services. These services include, but are not limited to: inpatient care, home care,
hospital support teams, orphan support groups, and education [29].
End-of-life or terminal care

On the surface, the definition of end-of-life care is self-evident: the care that patients and their
families receive when patients are dying or near death. End-of-life care is most frequently
provided during the last days or weeks of life and focuses on preventing suffering by attending
to the physical, emotional, and spiritual comfort of the patient and family. End-of-life care is the
specific application of palliative care interventions in the last hours, days, or weeks of life [28].
Palliative care as a public health approach within

cancer control programmes
Palliative care, like other aspects of cancer control, can be regarded as an exercise in prevention
prevention of suffering through timely diagnosis and expert management of physical symptoms
and of psychosocial and spiritual concerns, at the earliest possible moment [19]. Ultimately,
excellent palliative care is anticipatory in nature, rather than reactive. Evidence suggests that
physical, emotional, or psychosocial symptoms not treated at the early stages of illness, become
very difficult to manage later in the course of illness. In order to reduce patient and family suffering, implementing palliative care earlier in the course of disease as outlined by cancer control
strategies is essential. The WHOs public health approach provides guidance in this endeavour
by outlining four areas that are necessary for the integration of palliative care in cancer control:
(i) appropriate policies; (ii) adequate drug availability; (iii) education of health care workers and
the public; and (iv) implementation of palliative care services at all levels [30]. Each of these areas
will be discussed in detail.
Policies to move palliative care ahead . . . barriers that

stall progress
In the past four decades, there has been a steady growth in policy aimed at defining the core
elements of palliative care programmes and their role within cancer care. Significant documents
like the WHO Definition of Palliative Care [2] along with their programme for Cancer Pain
Relief which introduced the three-step analgesic ladder with use of adjuvant treatment have
been significant markers in the global push to incorporate palliative care within cancer control
models. An extensive review of international, national, and local policies is beyond the remit of
this chapter. Several articles provide excellent reviews of policies in the United Kingdom [31], the
United States [32], and the European Union [33]. The history of palliative care development in
cancer is also available [29]. However, we will highlight key policy developments in palliative care
and cancer control in order to further explore the integration of palliative care within a cancer
control strategy.
Developing palliative care policy

Ensuring that appropriate policies are in place at the national and local level is a key requirement
of the WHO public health approach to integrating palliative care within a cancer control strategy
[12]. National policies are essential for facilitating the implementation of palliative care programmes within health care plans [6]. A significant step for many countries has been to declare
palliative care as a right of its citizens. For example, in Canada, this was declared in June 2000 with
PALLIATIVE CARE AS A PUBLIC HEALTH APPROACH WITHIN CANCER CONTROL PROGRAMMES
the release of the Senate Subcommittee report Quality End-of-Life Care: The Right of Every
Canadian [34]. This foundational report detailed the importance of developing a Canadian strategy on palliative and end-of-life care, overseen by a national secretariat. This was established in
2001, within the federal department of Health Canada. As a result of these commitments, substantial progress in national end-of-life care policy has been made in Canada including: the development of Pan-Canadian Gold Standards for Palliative Home Care; National Norms of Practice and
Accreditation Standards; and the Compassionate Care Benefit Program2. Similar declarations and
policies have been made in the United Kingdom, Australia, and the European Union3.
The role of non-governmental organizations

Worldwide, there has been a groundswell of activity by non-governmental organizations (NGOs)
in the area of palliative end-of-life care. This is mainly due to the diligent work of national and
local hospice palliative care organizations aimed at defining palliative care services, developing
innovative models of care, standards of practice, accreditation standards, and guideline development. In the United States, for example, the National Consensus Project for Quality Palliative
Care brought together multiple stakeholders to develop voluntary clinical practice guidelines
to guide the growth and expansion of palliative care in the United States [35, p.738]. Other
countries have developed binding guidelines, recommending explicit service delivery models
for palliative care [36]. On an international level, the WHO National Program against Cancer
identified palliative care as a priority for national cancer programmes and suggested that governments revise their funding policies for the allocation of resources for palliative care [12].
Despite these constructive initiatives, several barriers exist that impede the development of
palliative care policies within cancer care strategies. Firstly, the essential components of cancer
care are not uniformly agreed upon or defined within legislation. While countries like the United
States and Great Britain have a national cancer act outlining the essential elements of cancer
care, others, such as Canada, are lacking an equivalent legislative mandate. In the United States,
for example, the original National Cancer Act was declared in 1971; in 2007 and 2008, suggested
amendments expanded the scope of care to include palliative and end-of-life care. An additional
bill, the Comprehensive Cancer Care Improvement Act4, was passed with hopes of expanding the
traditional mandate of cancer care to include palliative and symptom management programmes.
In the United Kingdom, the National Health Service (NHS) has developed a Cancer Plan,
outlining actions that ensure patients receive the correct professional support, care, and treatment, along with aims to improve the palliative care and psychosocial support provided [37].
In the absence of a national cancer act or declaration, countries are left with little guidance
or structure. In Canada, as an example, it is left to provincial jurisdictions to decide if palliative
care is included within the mandates of provincial cancer centres or if it is defined as a core
This is an employment insurance benefit which pays up to a maximum of six weeks to a person who has
to be absent from work to provide care or support to a gravely ill family member at risk of dying within
26 weeks [111].
In 1989 and 1992 the European parliament adopted resolutions on counselling and care of the terminally
ill; the Council of Europe published a set of European guidelines on palliative care in 2003, describing this
care as an essential and basic service for the whole population [29].
Introduced to the US Senate in March 2008, this bill seeks to provide coverage of comprehensive cancer
care planning under the Medicare program and to improve the care delivered to individuals diagnosed
with cancer by establishing a Medicare hospice demonstration program and grants for palliative care and
symptom management programs, education, and related research [112].
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health service. In one of the Canadian provinces for example, palliative care is a core health
service within the provincial health department, but is not part of the programme objectives of
Cancer Care Manitoba, the provincial cancer centre. Leaving provincial jurisdictions to decide if
palliative care is part of cancer control results in the fractured delivery of palliative care services
nationally and provincially, ultimately causing a disparity in the services provided for Canadians
with cancer. In 2006, the federal government funded the Canadian Partnership against Cancer,
which will oversee the implementation of the Canadian Strategy for Cancer Control [38].
Developing a coordinated national cancer control programme that incorporates palliative care
throughout the cancer continuum along with public education, legislation, and action planning
is a key to preventing undue suffering and providing dignified care to persons with cancer [39].
The other significant barrier to the development of policies concerning palliative care within
a cancer control strategy is the lack of funding and reimbursement for the relief of suffering.
Current physician billing structures are not geared towards remuneration strategies based on
time spent with patients and families, beyond immediate treatment issues. As such, psychosocial
and existential/spiritual dimensions of caring are particularly vulnerable and often sacrificed.
One of the means to redress this may be to develop policies and billing codes, aimed at identifying
the suffering experienced by cancer patients and the multifaceted approaches required within
comprehensive, quality palliation. The current cancer staging system, for example, describes in
detail the tumour type, location, and node involvement or metastasis (TNM system), yet does not
capture the impact on quality of life, symptom load, or other burdens the patient may be experiencing. Only one cancer out of 49 staged by the TNM system includes symptoms as an important
factor: lymphoma [40]. Adjusting this classification system to capture dimensions of suffering
due to tumour burden, treatment effects, and symptom distress, would transform the field of
oncology. This nosological approach would see palliative care principles applied to all patients,
and reimbursement mechanisms based on tumour load and burden of suffering. Norway in 2003
developed a diagnosis-related group billing code for inpatient palliative care patients, to ensure
more predictable and secure funding [41]. Appropriate billing structures for physicians will help
ensure that more doctors will engage in preventative palliative care. This preventive approach
addresses physical, psychological, existential, and spiritual distress of patients early in the trajectory of illness, which ultimately may ameliorate suffering at the end of life [42].
Finally, the current enrolment criteria of many hospice or palliative care programmes of
six months of life expectancy or less, is a significant barrier to implementing palliative care within
cancer control strategies. Physicians tend to be very poor at making accurate prognoses [43], and
are often overly optimistic in their estimates of time left to live. Additionally, most hospice and
palliative care programmes limit patients options regarding life-extending treatment [44]. This
places patients in the position of having to choose between curative intervention and palliation;
a dichotomy that works against the principles of supportive health care. By moving away from
prognosis-based criteria, to criteria based on holistic patient and family needs, a palliative model
of care can emerge, responding to a broad spectrum of issues and concerns facing patients and
families encountering life threatening or life limiting cancer [45].
Ensuring drug availability: a chain of command

Freedom from pain must be regarded as a human rights issue [46,47]. To redress inadequacies in
pain control, in 1986, the WHO developed a three-step ladder to guide clinicians in the management of cancer pain. Designed to be both effective and inexpensive, drug administration moves
from non-opioids (aspirin and paracetamol) to mild opioids (codeine) and then to strong
opioids (morphine) in response to patients reported pain levels. The pain ladder also recommends adjuvant drugs be administered and that drugs should be given by the clock, opposed to
on demand [48]. Over the past two decades, research has shown that WHOs pain control ladder
has been applied in a multitude of settings with high rates of success [4954]. It is highly regarded
as a simple drug management plan that is easily transferable between different countries, and
settings.
For the last three decades, the WHO has also published a Model List of Essential Medicines.
Essential medicines are those that satisfy the primary health care needs of the population [55] and
are reviewed every two years. Medicines are selected with due regard to disease prevalence,
evidence on efficacy and safety, and comparative cost-effectiveness [55, p. 522]. At WHOs
request, a working group was selected by the International Association of Hospice and Palliative
Care (IAHPC) to formulate an essential medicines list for palliative care. This list, consisting of
33 medications 14 of which were already included on the WHO Model List is now publicly
available and should increase access to appropriate medications for patients who have uncontrolled symptoms [55].
The assessment and treatment of symptoms is a cornerstone of palliative care. To be effective
in this endeavour, palliative care programmes require national drug policies that allow for ready
access to opioids, equitable distribution, fair pricing, and training in essential medications for
health care providers [56]. Even with the excellent guidelines provided by organizations like the
WHO and IAHPC, adequate symptom control through prescription of medications is difficult
to ensure. The most commonly reported barriers are the availability of opioids, a lack of health
care provider and public knowledge, and excessively strict national laws and regulations. These
barriers are not limited to developing countries; examples of disparity in access exist in developed
countries as well [57,58].
Opioid supply
Ensuring an adequate supply of opioids worldwide is a balancing act (see Figure 14.2). According
to work by the Pain and Policy Studies Group (PPSG)5, there should be an ongoing system of
communication amongst various stakeholders within both the health care and the drug supply
industry [59]; with inadequate information or poor communication, the balance to ensure
adequate medication will be thrown off. For example, information that the International Narcotics
Control Board receives ultimately determines poppy harvest and supply. The National Competent
Authoritys role is to estimate drug requirements and control the distribution chain whereas the
importers, manufacturers, and distributors must produce and import sufficient quantities for
retail distribution. Concurrently, the health care sector needs to be involved in ongoing training
and the purchase of supplies to meet need while anticipating patients drug needs. On the micro
level, physicians and nurses work to assess patients pain and prescribe according to need. Each
element of the system must work together to ensure adequate supply and distribution of opioid
analgesics.
A disparate consumption pattern has developed between resource-scarce and resource-wealthy
countries: the lowest-income countries consume only a small proportion of opioids while
a subset of developed countries consume the vast majority [59,60]. Quite simply, drugs are
not consistently available in many countries [61]; a report by Help the Hospices indicated that
over 20 per cent of palliative care service providers in Africa can never access strong opioids such
as morphine [60]. The difference in consumption may be due, in part, to the excessively strict
Based at the Paul P. Carbone Comprehensive Cancer Centre in the University of Wisconsin School
of Medicine and Public Health and established in 1996. It is designated as a WHO Collaborating
Centre [59].
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266
Patient Requirements
Health care providers
Hospitals, pharmacies, palliative care
Available Narcotics
Importers, manufacturers, distributers
National Competent authority
International Narcotics Control Board
Fig. 14.2 Elements of opioid distribution system

Source: From Joranson and Ryan (2007) [59].
governmental regulations, cumbersome administrative procedures [62], or a lack of foreign

currency to import the necessary drugs [63] that exist in many parts of the world.
Gap in knowledge
The extreme differences in opioid consumption patterns may also be due to the general (mis)
understanding of opioids amongst health care providers. While there may be a gap between what
is known about pain relief and what is actually done in terms of practice and care [59, p. 531],
it may simply be that best practices in palliative care including pain and symptom control are
not part of many medical curricula. Without knowing the benefits and uses of opioids, it would
be impossible for a doctor or nurse to include them in their management of patients [6,60,61,64].
Furthermore, this lack of knowledge by practitioners feeds into the imbalance of opioid availability; if health care staff do not document the patients need for narcotics, then an increase in supply
will not be realized [65].
For both health care practitioners and patients who have limited knowledge or understanding
of morphine, the issue of morphine use is exacerbated by the myths related to morphine as
the cause of death, fears of addiction, and fears of tolerance [6062, 66, 67]. In South Africa,
for example, morphine is not readily available in all health care centres [68]; the drug is typically
only available in provincial hospitals and may only be available on certain days of the week [69].
Even in large centres where pain control medications are readily available, pain is still often under
managed [70,71]. This reflects a general lack of knowledge in effective pain control techniques
nationwide.
National laws and regulations

In many countries, national regulations are prohibitive regarding morphine use [61]. One report
states that in some countries laws governing the handling of morphine and other controlled
drugs are impractical or so stringent that they prevent health care workers using morphine when
they feel it appropriate [60, p. 20]. Although laws regulating morphine use were often created
to prevent misuse and were adopted prior to advances in knowledge about pain and opioids [60],
they still exist as barriers within the morphine chain of supply and demand. Other barriers
expressed by health care workers were lengthy and prohibitive forms, stipulations on dosages,
short lengths of supply, and a lack of qualified workers as deterrents to opioid prescription [60].
The issues surrounding drug availability are not without solutions. As the PPSG asserts, even
with economic challenges, steps can be taken to enhance pain management. Several successes,
such as the list of palliative care essential medicines and the continual support of palliative care
by the WHO, are paving the way for improved pain management. While it is beyond the scope of
this chapter to examine success stories in detail, a variety of articles are helpful when considering
progress in various countries [59,64,7274]. The way forward requires the collaboration of health
care leaders willing to undertake public health reform. Through continued advocacy and education, adequate access to pain relief will become a required and expected component of cancer
control.
Palliative care education: models of success

Palliative medicine plays a significant role in the improvement of care for people throughout the
trajectory of illness, as well as when they are approaching death. This in and of itself is justification
for ongoing palliative care education for all health care providers. However, a more persuasive
argument for the inclusion of palliative medicine in training programmes may be that incorporating palliative care within the medical system could save resources; palliative approaches may
reduce practices that are unnecessarily aggressive, costly, and unwarranted [75]. It has been estimated that the annual financial burden of pain in the United States is greater than $100 billion,
including the cost of medical expenses, lost wages, and other associated costs [65]. Therefore, it is
understandable that there has been a worldwide effort focused on increasing palliative care
education.
Over a decade ago, the WHO challenged training institutions to make palliative care compulsory and give high recognition in institutions [75]. While progress is evident, reviews of education
programmes in training institutions around the world have found palliative care programming
to be patchy or non-existent [7686]. This is true of the literature from developed [8082, 8587]
and developing nations [76,83]. Case by case analyses of medical programmes around the world
indicated that some university programmes have developed reasonable palliative medicine
educational opportunities within both medicine and nursing faculties [88]. However, a variety of
large-scale educational initiatives have been developed within resource-rich settings; several will
be presented.
Canadian Pallium Project

This project, completed in September 2007, is described as an initiative to support, mobilize,
and help individuals and organizations navigate the complexity of multiple systems and agents
towards the constructive evolution of Canadas hospice palliative care capacity [89, p. vi].
From its inception in late 2000, the Pallium Project has evolved from supporting primarily
rural health care practitioners to collaborating with regional health authorities and communitybased voluntary sector partners [89]. With federal funding, Pallium has focused on the use of
innovative long distance technologies to support and enhance the education of health care
professionals [90].
Educating future physicians in end-of-life care

With the advice and collaboration of many varied palliative care stakeholders across Canada, the
goal of the EFPEC (Educating future physicians in end-of-life care) project was to design a
common curriculum for medical students. The development of this national curriculum, based
on common competencies for all undergraduate and clinical postgraduate trainees at all Canadian
medical schools, facilitated the introduction of palliative and end-of-life care questions in licensing and certification exams. The project was completed in March, 2008.
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End-of-life nursing education consortium

ELNEC (End-of-life nursing education consortium) programme, developed in 2000 and funded
by the Robert Wood Johnson Foundation, is an education programme to improve end-of-life
care in the United States [91]. The ELNEC curriculum has also been adapted for an international
audience with positive results [92].
Comprehensive advanced palliative care education

CAPCE (Comprehensive advanced palliative care education) programme a Canadian
initiative is a 120-hour programme designed for learners to extend their palliative care
knowledge into the hospice workplace and act as resources for the palliative care team. Developed
in 2002, a recent evaluation has shown that the CAPCE programme has effectively transferred
palliative care knowledge to the workplace [93].
Support, education, assessment, and monitoring project

In 2003, the SEAM (Support, education, assessment, and monitoring project) service model
was developed in Australia for use in rural palliative care delivery. The education component
was delivered to health care professionals, clients, and family members. The primary goal of the
model was to develop, implement, and evaluate an integrated service model of palliative care that
would focus on improving rural peoples access to services [94, p. 2].
Palliative care education in developing countries

Palliative care education programmes, whether at the university or community level, in developing countries appear to be uncommon [95,96] but increasing in number [97]. The literature does
contain descriptions of several education initiatives. For example, the University of Cape Town in
South Africa has recently begun a post-graduate palliative care distance education programme.
Prior to this programme, there were five South African doctors who had received training in
palliative medicine, all from the University of Wales in Cardiff [83]. Since its inception in 2000,
the programme, offering a diploma in palliative medicine or a master of philosophy degree
in palliative medicine, has accepted up to 27 students per year [83]. Another example is seen in
Uganda where palliative care education programmes have been in existence for over a decade;
training was provided through Mildmay International and has been extended to the Hospice
Association of Uganda as well as undergraduate medical education [97]. The African Palliative
Care Association, an organization for all of Africa, facilitates training and education for member
hospices and palliative care organizations. According to the APCA website, education and training objectives include developing standardized education and training programmes, providing
educational resources for partners, and assisting with technical needs during training and education (www.apca.co.ug).
Implementation of palliative care

Historically, the organization of hospice and palliative care services has been predicated on two
models. The first is a model of care where hospice denotes a place of care, in many instances
separate from mainstream healthcare. Many of these facilities or home care programmes are run
by charities or non-profit organizations, which rely on voluntary donations for a considerable
part of their funding. This type of model is perhaps best illustrated in the establishment of
St. Christophers Hospice by Cicely Saunders and her colleagues in the United Kingdom.
A second model arose from the development of inpatient units in acute care teaching hospitals
such as those established in 1974 at St. Boniface General Hospital in Winnipeg and at the
IMPLEMENTATION OF PALLIATIVE CARE
Royal Victoria Hospital in Montreal. Although such units are closely linked with oncology,
they remain separate from cancer centres and cancer control strategies. Indeed, cancer care in
the United States and elsewhere has been structured as a delivery system for chemotherapy
and radiotherapy, rather than as a comprehensive approach that addresses all patient concerns
including psychosocial, spiritual, and social concerns [26].
To fully embrace a public health approach to implementing palliative care within cancer
control strategies requires the extension of palliative care services beyond these two traditional
health care delivery models. For public health strategies to be effective, they must be endorsed by
governments and incorporated at all levels of the health care system; to be efficient, these strategies must be community-based and well coordinated [30,39]. MacDonald, in writing about this
issue more than ten years ago, stated that coordination between institutions, family physicians,
and palliative home care programmes is essential to providing a seamless flow of care and to
preventing patient suffering [16]. There is general agreement that palliative care needs to be
closely integrated with oncology services, and that it should be provided by an interdisciplinary
team, commence early in the course of cancer treatment, and be tailored to the needs of the
patient [98,99].
Using a health-promoting and population-based approach recognizes that not all people living
with cancer need or want the same level and access to specialized palliative care services [100,101].
A model of care that is flexible, integrated through formal partnerships with different services and
providers, incorporates generalist and specialist health professionals, has a single entry point and
administrative structure, and is responsive to the level of patient need are factors expressed in the
literature as integral to excellent palliative care provision [102104]. Palliative care networks,
modelled in several Canadian provinces [105107] and in the United Kingdom [104], are comprised of local stakeholders who help develop and implement strategic priorities and service
delivery models that will maximize resource utilization and integration to improve the delivery of
palliative care [105]. Though these initiatives are commendable, they may not be fully integrated
with treatment services such as cancer centres and other organizations that provide social services
[108]. However, one such example is seen in Australia. To be fully responsive to the breadth of
patient needs, Palliative Care Australia (see http://pallcare.org.au) developed a model that incorporated a population-based approach to planning for and providing palliative care services. This
model, combined with the proposed best practices framework for organizing healthcare delivery
systems by Hollander and Prince [109] has been adapted and is seen in Figure 14.3.
The acuity and complexity of patient and family needs defines the level of palliative care
services delivered within this model. In this manner, patients may move between different levels
of care throughout their illness trajectory. The vast majority of persons will fall into group A,
whereby their needs are most easily and best met by primary health care providers including community nurses, family physicians, and medical specialists such as oncologists. Those patients who
experience sporadic or occasional exacerbations of psychosocial, physical, or existential/spiritual
distress will require expert consultation from specialist palliative care services, with ongoing
care being provided by their primary care providers (Group B). A subset of these patients will
have needs requiring more intensive care that is best achieved through ongoing collaboration
and shared care arrangements between the primary care provider and palliative care specialist
(Group C). A small sub-group of palliative care patients (Group D) will have complex care needs
requiring direct ongoing involvement from specialist palliative care services either in the community or in designated inpatient/hospice beds.
This integrated model of collaborative care is built on a population-based approach with
defined levels of care and clear role delineation. The model recognizes and respects the relationship between primary care providers, patients, and family members. Additionally, the expertise of
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ife
Det
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Consultation /
Liason (B)
Primary Palliative Care

(A)
Patient Needs
Health Care Resources
Fig. 14.3 Providing palliative care within a cancer control strategy.

Source: From Palliative Care Australia (p.13, [110])
specialist palliative care providers is used more effectively and provides opportunities for formalized education and collaboration with generalist providers. For successful implementation of the
model, local needs and capacity must be taken into consideration when developing and delivering
palliative care. Other pre-requisites that will enhance the uptake and implementation of this
model include: (i) a positive philosophical and policy environment including sustainable funding, a commitment to the psychosocial model of care, and evidence-based decision making;
(ii) administrative best practices including a single or highly coordinated administrative structure, single funding envelope, and integrated electronic information systems; (iii) clinical best
practices such as standardized system-level assessment and care authorization, single system-level
patient classification system, and case management; and (iv) linkages across systems of care
including cross-appointments of staff [109].
Integration of palliative care and cancer control

There is little argument that palliative care has a rightful place within national cancer control
strategies and that most cancer patients wish to receive dignified care focused on promoting comfort throughout the course of their illness. What is debatable, however, is how fully developed a
nations awareness of the principles of palliative care is and how well integrated these programmes
are within models of cancer care. Although the WHO asserts that a national cancer control
REFERENCES
programme can be efficacious regardless of resources [5], a nations resources have a tremendous
impact on the level of integration and the extent of implementation in a national palliative care
programme. Limiting factors such as a lack of public knowledge or support, shortage of health
professionals educated in palliative care, limited access to opioids, and excess reliance on curative
interventions, reduce the likelihood that cancer patients will have access to palliative care programmes throughout their cancer trajectory. Adopting the public health approach to implementing palliative care requires that developed and developing countries find creative ways to use their
limited resources to overcome these barriers.
For rich countries, providing the full complement of services from primary care through to the
direct care provided by palliative care practitioners is possible. Successful achievement requires
national guidelines and accreditation standards, along with palliative care education that is standardized in all medical and nursing curricula. Well-resourced countries may also look at including
palliative care measures such as quality of life or symptom distress in cancer surveillance systems
as a means to monitor suffering within this population.
In countries with fewer resources, implementing national minimum standards for pain relief
and palliative care is essential [12]. All cancer patients must be guaranteed access to primary care
providers versed in the principles of palliative care. In this manner, medical and nursing education must encapsulate the core competencies of palliative care. Educational initiatives must meet
local needs, and integrating palliative care within developing countries cancer control strategies
requires the use of local community resources and capacity. For example in Kerala, India, the
Neighbourhood Network in Palliative Care provides training to community volunteers who
work in conjunction with palliative care professionals and health facilities to plan and deliver
services [72].
Regardless of the differences in resource intensity, leadership is required to demonstrate how
palliative care and cancer care services must evolve within the context of national health care in
order to ensure genuine cradle-to-grave care as a central tenet of a just and modern civil society
[89, p 6]. In order to achieve equitable, readily available, and accessible palliative care services for
all cancer patients, palliative care must be viewed as an integral element of a comprehensive
cancer control strategy.
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Part 5
Integrated cancer control
Chapter 15
From cancer care to cancer control:

organization of population-based
cancer control systems
Simon Sutcliffe1
The cancer challenge

It is a common misperception that cancer is an unforeseen, unexpected, and unwelcome event
abruptly interfering in an otherwise healthy life the concept that a cancer diagnosis has no
antecedent process. However, epidemiological and molecular studies identify that cancer is a
process a process that starts in health and progresses through events that cause normal cells to
acquire the properties of malignancy (uncontrolled proliferation; abrogation of programmed cell
death; failure to repair genetic damage; immortalization of cancer cells; and invasion of tissue and
metastasis) [1]. The consequences of this process constitute a burden expressed at a personal,
family and community, societal, and economic level. Accordingly, to address the burden requires
that the process be addressed; that there be a strategy directed to the elements of the cancer process, from primary prevention to end-of-life care, and that the strategy be directed to the entire
population.
A comprehensive, population-based strategy is based upon certain foundational premises:
Cancer is an increasing burden for all nations, constituting approximately 30 per cent of
deaths in developed nations largely as a result of population increase and aging, and an increasingly important component of population mortality in developing countries as improving
longevity and the shift from communicable to non-communicable disease mortality takes
place [2].
Cancer affects all members of the population there are no exceptions, only an enhanced or
diminished probability of developing cancer based upon susceptibilities arising from genetic
(hereditary), educational, socio-economic, behavioural, or circumstantial risks or exposures.
Such factors may give rise to disparities of outcome as they predicate against equal opportunity to derive benefit from preventive or therapeutic interventions [3,4].
The outcomes of cancer (such as mortality, 5-year survival, and functionality) are most affected by influencing adverse causal risk factors for cancer, by modifying exposures, often by
communication, education, awareness, and personal or societal choice. In effect, the greatest
impact upon mortality from cancer is exercised through control of incidence, or developing
cancer.
Simon B. Sutcliffe, MD, FRCP, FRCPC, FRCR, Board Chair, Canadian Partnership Against Cancer,
Canada, and Past President, BC Cancer Agency, Vancouver, British Columbia, Canada.
280
FROM CANCER CARE TO CANCER CONTROL
Cancer outcomes can be favourably influenced through therapeutic interventions, most successfully when applied earlier in the trajectory of the process.
The outcomes of successful interventions depend greatly on accessibility, timeliness, quality

and safety, as experienced by all members of the population.
Notwithstanding the application of all that is known to be beneficial, the current proportion
of patients who will die of their cancer is approximately 45 to 50 per cent in developed countries and 60 to70 per cent in the developing world, thereby reinforcing the necessity to know
more about effective cancer control through research as a means of applying knowledge to
improve cancer outcomes.
Population-based cancer control aims to reduce the incidence and mortality of cancer, and to
enhance the quality of life of those affected by cancer, through an integrated and coordinated
approach directed to primary prevention, early detection, treatment, rehabilitation, and palliation [46].
Cancer treatment, cancer care, and cancer control

The terms cancer treatment, cancer care, and cancer control are frequently used synonymously, as if they have a common meaning. However, as explored by Caron et al. [7] (and
described further in Chapter 17 of this book), the terms are quite distinct and present several
contrasts in ways to reduce the impact of cancer:
reducing incidence through prevention is included only in cancer control.
reducing mortality is included in all, but the clock starts with the diagnosis of cancer in the
treatment and care paradigms, and with risk/susceptibility for cancer in times of health in the
control paradigm.
the other essential contrast is between the episode of care (treatment) and the continuum of
care (care).
the institutional response to care (treatment) is distinguished from shared care across primary, community, and tertiary settings characterizing the continuum of care (care).
contrasts between the health system response as a facility-driven approach (treatment),

a community-driven approach through networks of care providers and support systems
(care), and an integrated approach across systems applied to health and illness management,
including education, transportation, environment, social services, health and illness services,
etc. (control).
The distinction of treatment, care and control has an important bearing on the design of the
organized cancer system (Figure 15.1).
Systems designed to provide organized treatment services have the potential to impact mortality and other cancer-related outcomes but not incidence, and can influence the quality and safety
of, and the satisfaction with, the treatment episode. Organized care will include all treatment,
diagnostic, and supportive services, can impact cancer outcomes but not incidence, and can influence quality, safety and satisfaction with both treatment and continuity of care. Cancer control
includes treatment and care; in addition, through prevention will affect incidence as well as mortality; addresses quality, safety, and satisfaction; and effects a cross-sectoral response (education,
transportation, environment, health management, social services, and illness management) to
enhancing both health and illness outcomes.
normal
epithelium
hyperplasia
dysplasia
intra-epithelial neoplasia
(carcinoma-in-situ)
locally invasive
cancer
metastatic cancer
invasion
angiogenesis
vessel invasion
cancer
spread
proliferation of
normal cells
proliferation of
abnormal cells
proliferation of
breach of BM
increasingly
access to stroma
abnormal cells with
intact basement
membrane (BM)
blood vessel
lymphatic vessels
accumulating changes within genome
cytology
radiology
pathology
surgery; RT; systemic therapies
supportive
palliative
end-of-life
molecular oncology (personal; predictive; prognostic; therapeutic)

susceptibility (risk exposure)
pre-clinical
diagnosis
prognosis
therapeutic
100
Probability
of survival
(%)
0
Time
Fig. 15.1 Interventional services in relation to carcinogenesis and survival.

Cancer is a process (carcinogenesis) through which the normal epithelium undergoes progressive change to acquire the characteristics of malignancy
(invasion and metastasis). Survival is only impacted as local disease becomes advanced and/or metastatic. Conventional cytology has the ability to define
cellular changes prior to the development of invasive cancer (dysplasia and carcinoma in situ). The majority of interventional services are relevant only to the
diagnosis, definition of extent and therapy of invasive cancer. Molecular pathology offers the opportunity to examine carcinogenesis through pre-malignant
and malignant phases, thus becoming relevant to primary prevention and high-risk screening (predictive and prognostic utility) as well as to the diagnosis,
classification, staging, and selection of therapy for established cancer.
CANCER TREATMENT, CANCER CARE, AND CANCER CONTROL
Diagnosis of
invasive
cancer
281
282
Population-based planning for cancer control

Population-based programme development for cancer control is a strategic activity, grounded in
valid information about the burden of cancer both as an expression of impact (personal, family
and community, society, and economy) and as a health and illness challenge to be controlled
(volume, distribution by extent of disease, disparities, early detection, diagnostic, therapeutic,
and care services) [6,8,9]
The design of a population-based programme must take many factors into account
(Table 15.1):
the needs of all members of the population from prevention to end-of-life care.
the alignment of needs with capacity to provide services within defined parameters of access,
timeliness, quality, and safety. Misalignment is characterized by queues, waiting times, disease
progression whilst waiting for care, or lack or denial of care.
the necessity for measures of outcome and output derived from valid data.
prioritization of elements of the cancer control spectrum from primary care to end-of-life care
according to needs and resources.
addressing all aspects of the process of carcinogenesis from risk exposure, through preneoplasia to established cancer.
the principles of quality and safety (including equity, equality, fairness, evidence, information
and communication).
integration to optimize coordination, efficiency, and effectiveness.
alignment to principles and practices that enable and promote enhancements in other noncommunicable disease control programmes (Figure 15.2).
engagement of various sections of public to demonstrate adherence to principles, performance, and accountability.
sustainability through ongoing secure resources.
appropriate governance, and management of both the plan (strategy) to enhance cancer control as well as the demonstration of enhanced population-based outcomes deriving from the
strategy (cancer control programme).
Certain themes underlie the design and implementation of a population-based cancer control
programme. What is known to be beneficial (evidence-based interventions) must be applied to
the population who stand to benefit this applies to primary prevention through risk factor control, early detection through organized programmes, and diagnostic, therapeutic, and supportive
interventions. This is commonly assisted by the use of practice guidelines, care paths, standards
of practice and/or protocols through which inappropriate variations of care are minimized.
What is yet to be known, or has yet to be proven to be beneficial, should be the subject of
research to enhance care through evidence of benefit [10]. Planning for an educated, skilled work
force is required according to the current and projected capacity for interventional services
defined in the cancer control plan.
Measures of outcome (such as incidence and mortality), process (such as accessibility and timeliness), quality, safety, and satisfaction need to be collected and reported periodically to all relevant stakeholders as a means of accountability and continuous programme development towards
optimal outcomes. Finally, there must be measures of system effectiveness based on assessment of
cost and benefit as a means of transparent identification of priority and allocation, both within
the cancer control programme and across broader health services.
OUTCOMES OF CANCER CONTROL; MEASURES OF PERFORMANCE
Table 15.1 Population-based cancer control and the cancer control issues being addressed
Population-based cancer
control key principles
Population-based programme
development key elements
Control of process rather

than a particular defining
event/end point
Comprehensive of all cancer control Incidence, mortality, and quality of life

interventions focused on
Strategic focus directed to a quantified
measurable outputs and outcomes objective
Addresses the cancer

control needs/expectations
of the entire population
Identifies and plans for interventions according to evidence-based

population need at a resourceappropriate level
A programme organized to be
comprehensive to the spectrum of
cancer control and the interventions
necessary to address improving
outcomes
Based on equity, fairness,

evidence for benefit, and
appropriate measures of
quality and safety
Evidence-based standards of
effectiveness, quality, and safety
built into interventional
programme structure
Disparities of outcome and mitigation

of unnecessary variation of practice
within the population
Performance and accountability
Integration of interventions
across institutions, health
settings (community;
tertiary, etc.) and socioeconomic circumstances
Addressing the pathway of care,

coordination and communication
between care settings, and interrelationship of health with socioeconomic concerns, transportation
(access), and education
Appropriate levels of care and care

providers
Evidence-based guidelines/pathways
for cancer control
Communication and coordination of
services
System linkage within health;
external to health
Optimal use of resources; avoidance of
fragmentation, exclusion and
duplication
Focused on continuously
enhancing cancer control
outcomes
Interventions driven by and linked

to application of valid knowledge
from health research to clinical
application
Knowledge transfer to achieve best

care
Applying what is known to be
beneficial to those who can benefit
Engagement, awareness, and/or
participation in knowledge generation
through research
Patient, public, and political Structural (organizational) and

(societal) engagement in
functional engagement of key
cancer control
stakeholders in programme
content, priorities, and funding
allocations
Cancer control issues being addressed
Accountability for use of public funds

Transparent processes for prioritization
and allocation of funds
Establishment of understanding and
trust between public, patients,
providers and payors
It should be noted that the key principles, elements, and issues being addressed are not diseasespecific, but can be applied to any health issue, communicable or non-communicable, affecting
the population.
Outcomes of cancer control; measures of performance

The justification to commit current and incremental resources to a cancer control plan needs to
be based in the ability to measure the performance, not only of the population-based strategy,
283
284
DIABETES
CANCER
HEART DISEASE
quality: performance, risk

human resource policy: planning, standards,
practices
surveillance outcomes, definitions, measures
Disease Specific
Strategies
national research plan (alliance)

balance of treatment: support,: palliation
clinical practice guidelines
(best practice)
standards of practice: quality framework
organized early detection programs
PREVENTION
Health & Well-Being
strategies
Healthy Public Policy

Determinants of Health
Fig. 15.2 Aligning the principles of cancer control and non-communicable disease strategies.
The types of intervention to establish and maintain a quality population-based cancer control
system range from primary prevention through organized early detection, treatment, research,
human resource management, and quality/risk/performance management. These interventions are
common to any population-based programme to control a chronic and non-communicable disease
(NCD) (e.g. diabetes, heart disease, etc). Given that the majority of environmental risk factors are
common for all NCDs, prevention strategies are largely disease non-specific. Specificity for disease
becomes relevant as the type of intervention becomes aligned to the specific disease process, for
example, early detection programme (common principles and process) aligns to cervical, breast, or
colorectal cancer.
but also the outcomes of population-based cancer control. The measures used are important both
to show the effectiveness of implementation of interventions, and to document the return on
investment in cancer control, as seen by the relevant stakeholder (the observer proposition).
Thus, patients may place more importance upon quality of life, functionality, and lack of toxicity,
compared to care providers who may place more emphasis on effectiveness of care assessed, for
example, by 5-year survival (measured from the date of diagnosis, not from the time of disease
onset as experienced by the patient). System administration and politicians may place greatest
importance on measures of cost effectiveness and cost-benefit (Table 15.2).
Table 15.2 presents outcome measures (indicators of performance) from system, population,
patient, and disease control perspectives and illustrates the linkage between the measure and the
attribute (outcome measures are also discussed in Chapter 18). In addition, within a publiclyfunded system, there is an accountability to ensure that the cancer plan (strategy) delivers what
it is funded to deliver over a period of time, and an accountability to ensure that population
ORGANIZATIONAL PLANNING FOR CANCER CONTROL
Table 15.2 Cancer control outcomes in relation to attributes

Attribute(s) of relevance
Outcome measure
Cancer incidence and mortality
Age-standardized incidence rate (ASIR)

Age-standardized mortality rate (ASMR)
Potential years of life lost due to cancer (PYLL)
Treatment outcome
Survival rates overall and cause specific mortality

Remission rates; freedom from progression rates
Effects on clinical and investigational outcomes, e.g. biochemical measures
Patient (person)-specific
outcome measures (individual)
Measures aggregated at
population level
Effectiveness of treatment as experienced effects on functionality,

symptoms, physical and mental health, and quality of life; primary
treatment effects and toxicity (short and long term)
Perceived quality of, and satisfaction with, care
Functionality
Survivorship issues
Socio-economic outcomes
Person-years of life lost (PYLL); quality- and disability-adjusted life years

(QALYs; DALYs)
Return to employment (income, taxation, corporate profits)
Functionality; disability (reliance on care system)
Effects on families and carers
Investment; return on investment in interventions (business case)
Opportunity and missed opportunity costs and implications
Socio-political outcomes
Priorities and resource allocation (absolute, relative to other health

demands, relative to non-health issues)
Investment; return on investment in interventions (opportunity)
Satisfaction and public opinion, and political priority and timeliness
health/cancer control outcome measures change in a favourable way as a consequence of implementing a population-based cancer plan. Aspects of this situation, whereby the implementation
of a plan may be expected to have measures of performance that will subsequently give rise to
favourable change in cancer control outcome measures, are depicted in Table 15.3. It will be
apparent that the performance of the plan is a surrogate for performance of the system, the two
being separable often by many years, but contingent upon sequential effective implementation.
Organizational planning for cancer control

The population includes individuals and groups who differ in terms of demographics, risk factor
exposure profiles, geographic location and ease of access to services, socio-economic status and
levels of education and health awareness. Within a population-based programme, the intent is to
deliver services to all sub-groups in the population, to produce equitable benefits in cancer control to the degree possible based on evidence for benefit; that is, to overcome the disparities of
outcome associated with inequalities of care resulting from, for example, heterogeneity of risk
factor exposure and socio-economic circumstances within the population [9].
From a population perspective, this philosophy implies that the principles underlying the cancer control programme, the policies for interventional services, the priorities, and the allocation
of resources will be common to the whole population, rather than discretionary to subsets of the
population based on demographics, risk profile, geography, socio-economic status, or level of
education. This whole-population philosophy has the objective of producing beneficial changes
in cancer control in the whole population, and of reducing or removing inequities that may
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286
Table 15.3 Performance of population-based cancer control programme (strategy) and health system
Attribute
Performance of population-based
cancer control programme
(process measures)
Outcomes of population-based cancer

control programme
(outcome measures)
Organizational
Governance, corporate management Cancer control outcomes (Table 15.2)

Systems for enabling implementation
Implementation and
service delivery
Performance according to targets

for implementation on time and
within budget
Quality, safety, and satisfaction measures

5-year survival rates by disease
Disease stage shift to earlier stages of disease
Change in risk factor exposure
Financial and
operational
management
Performance to budget; variance

Allocation
Comprehensiveness of programme across

cancer control spectrum
Accrual rates
Allocation and priorities
Sustainability
Stakeholder
engagement
Linkage and integration within plan

Leverage of resources
Coherent relationships alignment
Linkage and cross-constituency support

Accountability to stakeholders
Coherent messaging re population-based
cancer control
Meaningful public/patient engagement in
priority setting
Oversight
Board (strategy governance

structure)
Multiple levels
- designated providers/Boards
- NGOs; foundations
- patients and survivors
- public
Accountability
Funders (including tax payers)
Public
currently exist. Achieving equity in outcomes, however, may demand planned and appropriate
variation in the types of services offered to different individuals and groups and in the methods of
service delivery. There is a practical reality to the degree that a population can be appropriately
serviced through a single philosophic or geographic institutional entity. This necessitates the
consideration of a cancer control system, with unified philosophy, principles and policies, distributed according to the geography of the population (as close to home as reasonably achievable)
and enabled through common practices and infrastructure to function as one institutional,
population-based programme.
The question of decentralization, or distribution of care as close to home as reasonably
achievable, requires enunciation of the principles to be applied. In a publicly-funded system, the
over-riding principle is that the quality of interventional care and its outcomes will be the same
irrespective of location of care, i.e. quality of care does not differ according to the location of
care.
To meet this principle requires consideration of:
the facilities, personnel, skill-sets, and proficiencies necessary to provide cancer care at a certain level
the availability of services and supports preceding or following the interventional element of
care, for example, laboratory, pathology, and imaging capability as a pre-requisite for surgical
services; diagnostic and surgical services to support early detection programmes
ORGANIZATIONAL PLANNING FOR CANCER CONTROL
the availability of services to support the conduct of cancer care, for example, imaging, pathology, pharmacy, nutrition, and patient support services
All this needs to function within a system that supports and continually develops evidencebased care [8,10,11] through various means: expert practice groups, for example, tumour groups
that bring together medical and other clinical staff who deal with a particular type of cancer; readily available and ongoing communication, informational and educational exchange methods, for
example, teleconferencing, videoconferencing, tele-health, and clinico-pathological care conferences; the provision of enabling infrastructure, including clinical practice management guidelines, standards of practice, protocols, and pre-printed orders, preferably through a web-site or
on-line access mechanism; and engagement of health care professionals in establishing policy and
practice and ongoing information, educational, and human resource planning support.
The ideal of a single system for cancer control for the population is complex beyond its philosophy, principles, and policies inasmuch as the cancer journey will cross many geographies, institutions, oncologists, health care providers, and possibly both public and private systems. This
diversity may be addressed through a common approach to interventional care through guidelines,
standards, and protocols, but with different effector mechanisms depending upon whether interventional care is being delivered in a tertiary institutional setting or within the community (clinic or
primary care). In the former, institutional policies and practices may be standardized through
employment of professionals practicing within a dedicated cancer facility; in the latter, professionals
are often working for other employers and in facilities or clinics serving multiple health purposes,
giving less direct control. In this circumstance, the use of networks may be a valuable mechanism
to take evidence-based care guidelines or protocols from the tertiary institution setting to deployment across the community [12]. Networks are based in a common vision or purpose by a group of
health professionals wishing to see enhanced outcomes, integration, and continuity of care, notwithstanding that they are in different employer/employee relationships, geographies, and health
care settings. A single system for cancer control may, therefore, function at a population level
through a variety of effector mechanisms: dedicated cancer facilities, employed cancer professionals
providing population-based programmes in institutional settings, networks of health care professionals in various employment and facility settings providing care through common guidelines,
protocols and standards according to mutually agreed intentions to enhance cancer control outcomes; all enabled through a commonly accessible infrastructure to provide instruction, direction,
education, and communication to facilitate real time, evidence-based, best practice.
A further point of relevance is the alignment, or preparedness, of the health system to undertake
population-based cancer control. The level of cancer control interventions, be they low tech or high
tech, needs to align with the anticipated outcome goals of the cancer control plan. In practical terms,
this relates to the context in which cancer control can be effected based upon the type of health system
(public, private, or mixed), and social, political, and economic circumstances. As represented in
Figure 15.3, good population access with data capture through registries and/or surveys could support
preventive, palliative, and supportive services impacting incidence, mortality, and quality of life, even
without substantial infrastructure committed to treatment services. However, the intent to diagnose
disease earlier in screened populations, and to offer the interventional services to manage disease,
requires not only investment in early detection (screening) services, but also the cytology, pathology,
imaging, and treatment services necessary to manage detected disease. If the intent is to provide interventional services at a molecular level of understanding of disease and its response to therapy, the level
of investment must be at the functional level of imaging, molecular pathology, and targeted therapeutics. Accordingly, the cancer control system can function appropriately, either at a low or high level of
investment in infrastructure, provided the expected outcome measures of performance are aligned to
the context and realities of the prevailing health care system.
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288
Population-based Cancer Control Level of Preparedness

POPULATION
ACCESS
Registries
Demographics
Surveys
Prevention
Palliation
End-of-life care
Population Outcomes
Incidence; mortality;
Quality of life
TISSUE & CELL

ACCESS
MOLECULAR
ACCESS
Cytology; pathology; radiology Functional pathology & imaging
Early detection
Treatment
Comprehensive
Cancer Control
Care
Support/palliation
Intensity
of
intervention
Interventions
(low tech)
Surgery
Radiation
Chemotherapy
Interventions
(high tech)
Surgery (image-guided; laser;

robotic)
Radiation IMRT
Systemic, biological & targeted
therapies
Disease Outcomes
Survival; cure; quality
Predictive, personalized and prognostic oncology

Personal Outcomes
Effectiveness; morbidity; survivorship
Extent of population coverage
Fig. 15.3 Population-based cancer control plans internal and external context.
The implementation of population-based cancer control requires alignment of context, here represented
as level of intensity of intervention (a function of social, economic, and political realities) with the
outputs/outcomes of the programme at a population, disease, and personal level. Population outcomes,
expressed through incidence, mortality, and functionality (quality of life) can be approached by effective
prevention, palliative and supportive care services without substantive investments in treatment services.
Conversely, programmes designed to achieve personalized medicine within a population framework
require substantial investment in functional imaging, molecular pathology, and therapeutics.
Enhancing the efficiency and effectiveness of the

cancer control system
Two concepts that relate to the efficiency and effectiveness of the cancer control system are continuity and integration. In considering continuity, the fundamental element is the individual requiring care, their experience of the episodes of care over the course of the disease, and their
interpretation of the coherence and connectedness of their interaction with the health system [13].
Continuity is seen from a different perspective by the provider. As expressed by Haggerty et al.
for the provider, continuity relates to the perception that they have sufficient knowledge and
information about a patient to best apply their professional competence, and confidence that
their care inputs will be recognized and pursued by others. For the patient, continuity is the
perception that providers know what has happened before, that different providers agree on the
management plan, and that a provider who knows them will care for them in the future [13].
Common themes relating to continuity are informational continuity, management (clinical)
continuity, and relational continuity (the linkage of past, present, and future).
Integrated service delivery refers to health services that are coordinated around the health needs
of patients and communities [14]. Shortell et al. in their consideration of integrated health care
delivery, refer to certain prevalent developments that health care delivery value is created locally
ENHANCING THE EFFICIENCY AND EFFECTIVENESS OF THE CANCER CONTROL SYSTEM
(greater decentralization and sharing of functional support services with, and within, local regions
or units); blended models of centralization (strategy and direction) and decentralization (operations); greater emphasis on effective physician relationships; recognition of the complexity of integration and the necessity for focus on components for improvement; and the need for consideration
of mixing vertical integration through ownership with virtual integration through contracting,
alliances, partnerships, and out-sourcing [14]. Recognizing the common impediments lack
of aligned economic incentives, lack of coherent national policy, lack of a business case for quality
or value, and a continuing focus on the bottom line they propose that five forces will drive
directionally towards integrated health care delivery: the aging population (greater volume and
need for care), technology, empowered consumers, payment innovations, for example, pay for
performance or outcomes, and the need for institutional partners to effect strategy [15]. From the
system perspective, common themes related to service integration arise functional integration
(common, core support services), clinical integration (patient service management), information
(technology and management) and vertical integration (joint ventures, multi-institutional alliances, and linkage across health and other public service sectors) [1316].
From a cancer control system perspective, integration of cancer control ensures that programmes and services are coordinated around the health needs of public, patients, and communities at risk of or experiencing cancer. The relationship between the desired situation, the common
reality, key enablers, and some key inhibitors for enhanced performance regarding continuity and
integration is outlined in Table 15.4.
Vertical and virtual integration is explored by Shortell et al. in the context of the need to partner within the traditional health sector and across sectors; the concepts of trading alliances of an
instrumental (intended for each partner to achieve its separate objectives) or symbiotic (intended
to achieve a shared goal that neither can achieve alone) nature, and designed to involve the
exchange of different resources and capabilities to create value [14]. From a cancer control perspective, this raises the questions of where and how does the cancer control activity fit within the
broader health agenda at local, national, and global levels and who does what to ensure coherent,
effective implementation? Figure 15.4 provides a simple illustration of fit at an institutional
or state/province/country level, how does the cancer control plan relate to other health plans for
communicable and non-communicable diseases; and within what context (resource setting for
health and illness control), and with what priority, relative to other health and societal issues?
How does a state/province/country cancer control plan fit, or relate, to cancer control plans for
a nation (or another governed jurisdiction); how do national plans relate to cancer control for a
health region, for example, Latin America and the Caribbean, or Europe, recognizing the heterogeneity of context and priority within differing countries within a region; and how do cancer
control plans at institutional, national, or health region levels relate to the global endeavour in
cancer control the enabling of enhanced cancer control through knowledge sharing and
collaboration amongst nations.
The roles of different constituencies in the provision of population-based cancer control are
explored in Figure 15.5. Within the content and process of cancer control, knowledge generation
through research, knowledge validation through derivation of evidence for benefit, and knowledge application (best practice) are the key steps in knowledge transfer from science to population application. The participants and their potential roles within and across the knowledge
transfer framework are illustrated schematically.
The important point is that integration of all partners into a coherent representation and
implementation of the cancer control plan is necessary each has an important role and a relatively unique ability to influence the public/patient/provider/political spectrum necessary to
effect and implement a population-based cancer control plan.
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290
Perspectives
Desired situation
Reality
Key enablers
Inhibitors
Patient
Coherent and connected

experience by the individual
over time. Expectation that
what has happened before is
communicated in real-time,
that different providers agree
on the management plan,
and that a provider who
knows them will care for
them in the future
Perception of fragmentation
Poor continuity of prior knowledge,
current health state, information
transfer
Breakdown between tertiary &
community
Illness management rather than
whole person care
Variable use of evidence
Information management/
technology (IM/IT)
Electronic health record (EHR)
Care-paths
Clinical practice guidelines
Standards of care
Protocols
Multidisciplinary team
Networks (primary/community/
tertiary)
Jurisdictional competition
Payment and reimbursement systems
Provider and institutional role ambiguity
Territoriality: geographic; professional;
administrative
Health Provider
Providers have sufficient

knowledge and current and
past information about a
patient to best apply their
professional competence, and
confidence that their care
inputs will be recognized and
pursued by other providers
Inadequate real-time access to

current and past information about
patients
Currency of medical competence
and decision-making through evidence/best practice
Time/inclination to explore all appropriate options for care and healing
IM/IT
EHR
Evidence-based care
Tumour groups
Integrative care frameworks
Jurisdictional competition
Payment systems
Inter-professional rivalries
Policy/frameworks for health and illness
management
Health system/
administration
Modern, cost-effective system

characterized by closer working relations across and
between components of
health care (hospitals) and
other sector elements
(long term care, primary care,
home care, public health,
social welfare, housing,
schools, police, etc)
Mounting cost pressure

Duplication of services
Gaps in service provision
Manage to budget rather than
better health
IM/IT
EHR
Intersectoral system perspective
Functional integration of care
services
Out-sourcing as appropriate
Segmented budgets
Manage by budget performance rather
than health performance
Policy frameworks
Table 15.4 Achieving continuity and integration of service delivery for cancer control
ARE ORGANIZED, POPULATION-BASED DISEASE CONTROL PLANS NECESSARY? . . . EFFECTIVE?
What the content of the cancer control plan

How the process to implement the plan
Who the partners in the plan
Global
When context; priority; readiness
Regional
National
Institution
(sub-national)
Plans between institutions within a

discrete geography and governance
Plans between components of
a large population or National
governance entity
Plans between member nations of a
region (WHO/World Bank) eg Latin
America and the Caribbean
Plans between institutions,
organizations, countries and regions
to enhance global cancer control
Fig 15.4 Population-based cancer control plans a framework for partnership.

Population-based cancer control plans do not exist in isolation of other health priorities.
They have an alignment within institutional priorities (based on burden, referral practice, critical
mass of expertise, strategic priorities, priorities of other institutions, etc.); within national cancer
plans across regions, states, provinces etc. to benchmark, create critical mass, and add value
through collaboration and knowledge transfer; within regions, for example, North America, Latin
America, the Caribbean, etc. and at a global level to effect knowledge sharing, mentorship,
assistance at personnel, programme, or financial level and progress through partnership.
Are organized, population-based disease control plans

necessary? . . . effective?
Cancer is a process the process of carcinogenesis enacted at a cellular level, with impacts at an
individual and population level. The opportunities to intervene in the process to achieve a more
beneficial outcome range from primary prevention (often deriving from interventions impacting
early life circumstances and choices) to end-of-life care. Accordingly, a cancer strategy needs to
be directed to the multiple steps in the process in a manner related to context of population circumstances, resource-availability, and appropriateness of allocation. Thus, a strategy to control
cancer is necessary . . . but, insufficient unless effectively implemented.
Implementation of the cancer strategy can be evaluated in a number of ways (Table 15.3); however, the ultimate question is whether implemented plans favourably influence cancer control
outcomes, and more specifically, outcomes determined to be beneficial as defined by the needs of
the stakeholders and partners enacting the plan.
Rochester et al. in addressing the evaluation of comprehensive cancer control efforts draw
attention to the challenges inherent in linking the plan to the outcomes [17] aligning the evaluation, its process, rigour, and measures of benefit, to the needs of the stakeholders; the difficulties
in attributing causality between interventions and outcomes. In ideal circumstances interventions would clearly precede results, control populations would be used, and there would be no
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292
Population-based cancer control plans a framework for partnership

What is to be done and how (content and process)
Purpose
Role
Knowledge
generation
(research)
Knowledge
validation
(evidence)
Knowledge
application
(best practice)
National Government
Ministry of Health (and other ministries)
Whom?
What Role?
NGOs/Foundations
When?
Patients / Public / Advocacy
Industry
investors
Private health systems and providers
Researchers
Clinicians
Health Professionals
Fig 15.5 The relationship between the purpose of the population-based cancer control plan
(what is to be done and how the content and process of the plan) and the roles of the various
constituencies (stakeholders) in effecting the plan.
The constituencies will have differing roles relative to the elements of the plan, for example,
knowledge generation and the research community; patients, public, and NGOs, with respect to
advocacy; provincial/state governments at knowledge application (best practice). All constituencies,
however, have a role which needs to be understood in the context of value greater than the sum
of the parts rather than fragmented or competitive relationships between necessary partners.
variation of other factors affecting outcomes. In reality, it is often difficult to define the onset of
interventions impacting outcomes, control populations would imply denial of health interventions, and separating the effects of cancer control interventions from other relevant societal and
health system interventions is impossible.
Thus, Rochester et al. conclude that causality can be approximated and can be discussed; it
cannot be assured [17]: noting the difficulty in defining the value add of the strategy, i.e. the
benefits attributable to the collaborative activity that could not be achieved by the partners functioning independently; the time lag between interventions to control cancer and evidence of
improved cancer control; and the lack of data underlying the ability to link intervention and
effect, for example, nutritional intake, sun exposure, exercise, quality of life, and functionality.
Given the difficulties in providing evidence that cancer control strategies per se are effective, a
reasonable approximation would be the demonstration that interventions can cause changes
within components of the cancer control spectrum that may reasonably be expected to influence
outcomes favourably. Suitable examples of this premise might include the following:
Primary prevention tobacco control; the reduction in tobacco smoking through various
forms of intervention (legislation, taxation, social practice, etc) has resulted in serial reductions
ARE ORGANIZED, POPULATION-BASED DISEASE CONTROL PLANS NECESSARY? . . . EFFECTIVE?
in age-standardized incidence rates of lung cancer, predominantly in males, in developed

countries [18] (see also Chapter 2).
Cervical screening organized cervical cytology programmes have been demonstrated to be

more effective than opportunistic activity in terms of age-adjusted incidence reduction and
accrual rates within the target population [1921], and a reversal of adverse trends in incidence and mortality has been shown following the introduction of organized, population
screening [22] (see also Chapter 4).
Screening mammography notwithstanding controversy, there is general agreement that

screening mammography has contributed to declining age-standardized mortality rates for
breast cancer. The magnitude of the effect is more difficult to assess, given the introduction of
systemic therapies in adjuvant settings (hormonal and chemotherapeutic), a refined role for
adjuvant radiation therapy and greater use of, and compliance with, guidelines for optimal
practice [23,24] (see also Chapter 4). An alternative determination of the beneficial impact of
organized screening mammography lies in the domain of efficiency of population-based
interventions. Thus, in British Columbia, provincial expenditures on bilateral mammography
have declined whilst the number of examinations has increased; this has been achieved by
increasing the number of screens within the organized programmes at a lower unit cost
whilst decreasing the number of non-organized programmes/diagnostic screens at higher
unit cost. The effectiveness of screening mammography increased through interpretation
by accredited radiologists within the programme, clear guidelines for eligibility, increasing
participation, and a reduction in the inflation-adjusted budget for mammography
services [25].
Treatment/research enrolment in clinical trials. Funding commitments through the National

Cancer Research Institute in England have resulted in more than a doubling of the enrolment
of cancer patients into clinical studies within a three-year time frame, to a 2006-07 enrolment
of 11.2 per cent of incident cases (see also Chapter 14).
Treatment/patient experience. Independent evaluations of the National Cancer Plan in

England show progress in relation to improved cancer patient experiences, meeting targets for
access to cancer services, reconfiguring services, increasing multidisciplinary care and improving staffing ratios and capital equipment/facilities. As yet, eight years into the initiative, the
benefits of the plan in terms of survival of cancer patients remain to be established [26]
(see also Chapter 14).
Treatment changes in standards derived from practice audit. Mitry et al. described improvements in colorectal cancer survival among 5874 patients studied over a 24-year period between
period 1976 to 1987 and 1988 to 1999 [27]. Factors associated with improvements in relative
survival included a higher proportion of patients resected for cure, standardization of surgical
technique (total meso-rectal excision), reduction in post-operative mortality, increased use of
adjuvant chemotherapy for colon cancer and of surgery with radiation therapy for rectal
cancer, and an increasing use of interdisciplinary consultation [28].
Treatment compliance with clinical practice guidelines. In March, 2001, the BC Cancer
Agency implemented a policy recommending (and reimbursing) the use of CHOP (cyclophosphamide, adriamycin, vincristine, and prednisone) and rituximab for all newly diagnosed
patients with advanced stage DLBCL (diffuse/large B-cell lymphoma), regardless of age, in the
province of British Columbia (BC), Canada. Comparison of overall survival and progressionfree survival rates for all patients in BC diagnosed in the 18-month periods before and after the
introduction of rituximab showed a dramatic improvement in outcome, with an approximate
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294
doubling of overall and progression-free survival, with a median of 24 months of follow-up

[30] (see also Chapter 10 and Figure 10.9).
Similarly, in a study of the impact of guidelines on the consistency of adjuvant therapy for
node-negative breast cancer, comparing British Columbia (with province-wide guidelines)
and Ontario (with no province-wide guidelines), Sawka et al. observed that patterns of pathology reporting were consistent with awareness of the factors to define indications for adjuvant
therapy in British Columbia, consistency of care was greater in British Columbia than Ontario
by all diagnostic grouping systems, and that the observed patterns of practice in British
Columbia corresponded to the BC guidelines [31].
The evidence to determine a favourable impact of population-based cancer plans on cancer

outcomes is difficult to establish, other than in a piece-meal fashion. The situation for other
communicable and non-communicable diseases is more apparent, perhaps because the pathogen
or attributable cause is easier to define, and hence, eradicate or mitigate, and the time course of
the disease is shorter. The World Bank has put forward criteria by which it has proposed sixteen
examples of diseases or health states that have been improved, or substantially eradicated, by
population-based strategic interventions, largely of a public health nature [32]. The criteria
include: implementation on a significant scale; address a major public health problem; lasted at
least five consecutive years; cost effective (less than $100 US per disability-adjusted life year
(DALY) averted); clear and measurable effect on health outcomes (i.e. not process, accrual, or
coverage); and variable interventional methods (e.g. products, services, behaviours, and risks).
The successful interventions identified have been directed to communicable diseases (Chagas
disease, infectious diarrhoea, guinea-worm, measles, tuberculosis, hepatitis-B, onchocerciasis,
polio, smallpox, trachoma, and HIV/AIDS), public health systems (salt fluoridation, salt iodination, and maternal health), life-style, and social policy (tobacco control; family planning, and
financial incentives for health). Many of these examples, for example, smallpox, polio, and
onchocerciasis, clearly indicate the principles of definition of a strategy to control a disease process, implementation of the strategy preceding results, and control or eradication of an attributable
cause of population ill-health.
Conclusions
Are population-based cancer control programmes necessary to control cancer? This premise is
supported in this chapter, given that cancer is an increasing burden for all populations; it is a
process with an underlying genetic basis that arises in health and progresses through illness,
reduced functionality, and death, if not reversed; multiple opportunities exist for intervention
through prevention, early detection, treatment, and palliation/end-of-life care; and interventions
can be demonstrably effective and directionally consistent with expectations of improved cancer
control outcomes. The issue, however, is not whether population-based strategies are necessary;
it is a question of whether, and to what degree, they are implemented that will ultimately determine their value in controlling cancer. The problem has less to do with the content of population-based cancer control, but rather to the context, opportunity, and reality of implementing
population-based interventions.
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the challenge of cancer in Europe, pp. 11333. Institute of Public Health of the Republic of Slovenia,
Ljubljana.
25 Coldman AJ (2008). British Columbia breast cancer screening program. Personal communication.
26 National Audit Office, Department of Health (2009). The NHS Cancer Plan: A progress report. HC 343,
135. March 11 2005. The Stationery Office, London. May 25 2009.
27 Mitry E, Bouvier AM, Esteve J, & Faivre J (2005). Improvement in colorectal cancer survival:
A population-based study. Eur J Cancer, 41(15):22972303.
28 Phang PT, Strack M, & Poole B (2003). Proposal to improve rectal cancer outcomes in BC. BCMJ,
45(7):33035.
29 Murata A, Brown CJ, Raval M, & Phang PT (2008). Impact of short-course radiotherapy and low anterior resection on quality of life and bowel function in primary rectal cancer. Am J Surg, 195(5):61115.
30 Sehn LH, Donaldson J, Chhanabhai M, et al (2005). Introduction of combined CHOP plus rituximab
therapy dramatically improved outcome of diffuse large B-cell lymphoma in British Columbia. J Clin
Oncol, 23(22):502733.
31 Sawka C, Olivotto I, Coldman A, Goel V, Holowaty E, & Hislop TG (1997). The association between
population-based treatment guidelines and adjuvant therapy for node-negative breast cancer. British
Columbia/Ontario Working Group. Br J Cancer, 75(10):153442.
32 Jamison DT, Breman JG, Meashorn AR, et al. Disease control priorities in developing countries. 2nd ed.
International Bank for Reconstruction and Development. The World Bank, Washington DC.
Chapter 16
Getting the public involved in cancer

control doing something besides
worrying
Patricia Kelly, William Friedman, Tara Addis, Mark
Elwood, Claire Neal, Mark Sarner, Simon Sutcliffe1
Public engagement refers to the publics involvement in determining how a society steers itself,
makes decisions on major public policy issues, and delivers programmes for the benefit of people.
It is closely linked to the concept of social cohesion and the building of shared values, reducing
disparities in wealth and income, and enabling people to engage in a common enterprise and face
shared challenges as members of a same community.
Public engagement is the continuum along which individuals move from a basis of awareness
of an issue through understanding to personal involvement and informed action, as shown by
the ladder of engagement used by the Campaign to Control Cancer (Canada) organization
(Figure 16.1). Basic awareness is the first step in the continuum and individual or collective
informed action is the last and most desired step.
Cancer control with its greater emphasis on prevention and information prior to a cancer
diagnosis benefits from employing a public engagement/social mobilization model in many
ways. Public engagement:
Accelerates collective momentum and social change
Fosters inclusivity (shared goals, aspirations, language, and action)
Engages highly motivated individuals as credible spokespersons
Reduces stigma and isolation
Increases effective management and allocation of resources and effort
Enhances transparency and accountability
Engages decision-makers and key influencers
Mobilizes stakeholders and citizens to act
Patricia Kelly, MA, Chief Executive Officer, Campaign to Control Cancer (C2CC), Toronto, Ontario
Canada; William Friedman, PhD, Chief Operating Officer and Director of Public Engagement, Public
Agenda, New York, NY, USA; Tara Addis, BSc., Chair, Stakeholder Relations, Campaign to Control
Cancer (C2CC), Toronto, Canada; J. Mark Elwood, MD, DSc, FRCPC, FAFPHM, Vice-President, Family
and Community Oncology, BC Cancer Agency, Vancouver, British Columbia, Canada; Claire Neal, MPH,
CHES, Director of Education and Program Development, Lance Armstrong Foundation, Austin, Texas,
USA; Mark Sarner, President/CEO, Manifest Communications, Toronto, Ontario, Canada; Simon B.
Sutcliffe, MD, FRCP, FRCPC, FRCR, Board Chair, Canadian Partnership Against Cancer, Canada; Past
President, BC Cancer Agency, Vancouver, British Columbia, Canada.
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GETTING THE PUBLIC INVOLVED IN CANCER CONTROL DOING SOMETHING BESIDES WORRYING
CE
UEN
INFL
ING
D
TAN
RS
NDE
DGE
WLE
KNO
Fig. 16.1 Schema of public engagement.

Source: From Campaign to Control Cancer in Canada, reproduced with permission [3]. http://www.
controlcancer.ca/en/know.
Cancer control represents a conceptual shift from concentrating on the individual patient who
presents at a cancer clinic to a concern for the whole population, and lends itself well to the public
engagement potential for accelerating change. The call to public engagement is shown in the
approach of Lance Armstrong, champion cyclist, cancer survivor, and founder of the Lance
Armstrong Foundation in the United States [1], dedicated to inspiring and empowering people
affected by cancer (Figure 16.2): At the Lance Armstrong Foundation, we unite people to fight
cancer believing that unity is strength, knowledge is power, and attitude is everything.
People are often surprised to learn that cycling is a team sport. The team is critical.
It's everything. The images of a lone guy crossing the line on a mountain top betray
an important realityeight other teammates and a tireless crowd of support staffers
got him there.
Every good fight needs a good team. The fight to make cancer a global priority is
no exception.
I believe we must ensure that everyone benefits from what we know today about
cancer prevention and detection. We must fully support scientific discovery, which
is our best hope for improved screening and therapies and better understanding of
prevention and metastases. We must ask ourselves what is at stake and recognize
that it is our spouses, parents, children and friends.
It is time to change the experiences and expectations of cancer. It is time to marshal
our collective will, our passion, our outrage, our insistence and our voices.
Significant accomplishmentswinning a Tour de France, surviving canceralmost
always demand an active and engaged team. The fight against cancer is no exception.
Millions of cancer survivors are counting on you. Their loved ones are counting on you.
I'm counting on you.
LIVESTRONG,
Fig. 16.2 A letter from the Lance Armstrong Foundation Founder and Chairman.
Source: From Lance Armstrong Foundation, reproduced with permission [1]. http://www.livestrong.org.
INCREASING PUBLIC CAPACITY FOR CANCER CONTROL
Increasing public capacity for cancer control

The approach to the public will emphasize messages such as these: in todays world, anyone can
develop cancer, including world-class athletes and other people at low risk. Everyone will be
touched by cancer as a person living with a diagnosis, or a family member or a friend. Even
though scientists understand many of the factors that put people at risk, these factors may only
account for part of the disease. Over 40 per cent of the more than 7 million cancer deaths world
wide could be prevented. The technology for screening, diagnosing, and treating is mature, and
many further cases of cancer could be cured.
Understanding why we have been unable to convince the public that treating and preventing
cancer is not only possible, but a wondrous thing is a first step in understanding the potential for
a public engagement approach. Consider the following questions:
How might an engaged and mobilized public and corporate sector accelerate increased
compliance with screening programmes?
How might public reporting of outcomes, access, and waiting times help to sustain public
confidence and political commitment to quality cancer care, in a socially responsible context
of competing healthcare needs?
How might school-based programmes help impact risk factors such as tobacco use, sun
exposure, unhealthy diet, and physical inactivity?
Human papillomavirus (HPV) vaccines have the potential to prevent infection with strains of
HPV that are responsible for the bulk of cases of cervical cancer (not to mention that HPV is
also responsible for some cases of throat cancer and penile cancer), as discussed in Chapter 6.
Logically, this should prevent most cases of cervical cancer. Yet acceptance of HPV vaccination
involves many economic, cultural, social, and religious issues, and many teenaged girls and
their parents may reject an HPV vaccine programme. How might public engagement strategies
that include evidence-based messaging from diverse communities help address the issue?
Answering these questions should be a priority for cancer control professionals and health
policy makers, because everywhere the problem of fatalism and failing to translate cancer progress
into behaviour change appears alarming. Recent studies conducted in the United States have
shown that almost half of the American public believes that it seems that almost everything
causes cancer, about 1 in 4 feel theres not much one can do to lower the chances of getting
cancer, and 3 out of 4 felt there were so many recommendations, its hard to know which ones to
follow [2]. This is evidence that there is widespread confusion and helplessness in the American
adult population in terms of cancer prevention. Such fatalistic beliefs about cancer prevention are
having a negative impact, and those who hold fatalistic beliefs about cancer prevention may be
at greater risk of cancer because they are less likely to engage in various prevention behaviours
such as exercising weekly, not smoking, and eating five or more fruits and vegetables daily.
Understanding the publics starting point suggests that insensitive approaches to cancer control
communications will fail. The hallmark of some has been proselytizing: If we say everyone should
have the vaccine, everyone should have the vaccine. Trust us. That way of communicating
preaching rather than educating just doesnt succeed any more; not in the age of 24-hour news
channels, the Internet and instant messaging. It is not enough to tell people what to do because
its good for them: you have to make your case and make it well. That is particularly true when
tackling sensitive topics such as sexual mores and gynaecological health which will necessarily
arise in a discussion of HPV.
Public engagement efforts that address social change and cancer can be a unique and bold
experiment in citizen-led policy-making where, working alongside experts, practitioners, patients
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and survivors, everyday citizens can take account of cancers effects and future. Convening
authentic public engagement efforts communicates confidence in the capacity of people to understand complex issues and make good decisions. When given the information and the opportunity, the collective intelligence of citizens is a remarkable and powerful force for public action.
The future of cancer is an issue public engagement processes can deal with constructively by
raising awareness, generating a sense of purpose and urgency, and deepening a sense of shared
responsibility for choices made.
To have sustainable impact, there remains a need to broaden our understanding of the key
principles and practices that underlie successful public engagement in cancer control. This
chapter draws attention to the importance of public engagement in sustainable cancer control
policy, the continuum for engagement practices based upon intended outcomes, the principles
and practices that guide successful efforts, and new trends and ideas for building organizational
capacity. Practical action steps are recommended, indicating how diverse groups can support
effective public engagement in cancer control efforts.
One illustration that has been used in Canadian cancer strategy developments shows the
strategy (the CSCC, Canadian Strategy for Cancer Control [3,4] as dependent on maintaining
the constants of collaboration and collective social capital (k), managing the five variables (p) of
population, people, platform, profile, and politics, and raising the necessary funding (f) (Figure
16.3). The formula helps illustrate the emerging prominence and value of public engagement in
supporting comprehensive cancer control.
Authentic engagement versus business as usual

In the past, one of the most common approaches to engaging the public in cancer control
programmes the expert panel subjected a passive, glassy-eyed audience to the pontificating of
a few knowledgeable individuals. This approach operates on the assumption that providing more
information is the key to engaging people. Information has a place in the grand scheme, but its
easy for this approach to amount to little more than a data-dump. Public education campaigns
based upon a static model of information dissemination have a role to play but ultimately its up
to individuals, communities, and governments to understand whats at stake and take action.
Action planning requires time to build a knowledge base, engage in choice-making and determine
priorities. By involving citizens in meaningful partnerships, people can help improve not only
c.s.c.c
k = kollective
kollaboration
k.p5.f
p5 = people
profile
plan
platform
politics
f = funding
Fig. 16.3 A Theory of Relationships for successful implementation of the Canadian Strategy for
Cancer Control.
Source: From National Cancer Leadership Forum, reproduced with permission [4]. http://www.
controlcancer.ca/en/news/nclf-events.
Increasing level of public impact
Public
participation
goal
Promise
to the
public
Example
techniques
Inform
Consult
Involve
Collaborate
Empower
To provide the
public with
balanced and
objective
information
to assist them in
understanding the
problem,
alternatives,
opportunities
and/or solutions.
To obtain public
feedback on
analysis,
alternatives
and/or decisions.
To work directly
with the public
throughout
the process to
ensure that public
concerns and
aspirations are
consistently
understood and
considered.
To partner with
the public in each
aspect of the
decision including
the development
of alternatives and
the indentification
of the preferred
solution.
To place final
decision-makin
in the hands of
the public.
We will keep
you informed.
We will keep you

informed, listen to
and acknowledge
concerns and
aspirations, and
provide feedback
on how public
input influenced
the decision.
We will work with

you to ensure that
your concerns
and aspirations
are directly
reflected in the
alternatives
developed and
provide feedback
on how public
input influenced
the decision.
We will look to
you for advice
and innovation
in formulating
solutions and
incorporate your
advice and
recommendations
into the decisions
to the maximum
extent possible.
We will
implement
what you decide
Citizen advisory
committees
Consensusbuilding
Participatory
decisionmaking
Citizen juries
Ballots
Delegated
decision
Fact sheets
Web sites
Open houses
Public comment
Focus groups
Surveys
Public meetings
Workshops
Deliberative
polling
Fig. 16.4 The spectrum of public engagement continuum.

Source: From International Association for Public Participation, reproduced with permission [5].
http://www.iap2.org/associations/4748/files/spectrum.pdf.
individual health but also the health of neighbours, family, and friends. A spectrum of public
engagement, moving from passive to active involvement, is shown in Figure 16.4 [5].
Finding ways of genuinely involving those directly affected by cancer will also help to strengthen
public engagement in the long-run. Although it may take more time in the short term to attract
a network of people affected by cancer, and to build leadership skills in cancer control, it is worth
the investment.
Frameworks for public engagement

This framework can be applied to action at all levels: local, national, and international. These
models have been used to guide the successful public engagement campaigns for implementation
of comprehensive cancer control plans in developing and developed countries. This section draws
on work by Dr. Will Friedman and his colleagues at the Center for Advances in Public Engagement
at Public Agenda, especially on their document, Public Engagement: A Primer from Public
Agenda [6].
The framework can be used in many ways to plan public engagement work systematically, and
allows participants to gain skills by learning and networking with others. These planning activities
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allow participants to deepen their understanding of engagement and build partnerships and
alliances with other organizations.
There are a number of formats or structures available for conducting public participation. The
format is selected based upon the desired outcomes. These formats can:
Share information
Bring people together to seek common ground
Collect input and provide feedback
If we model sincerity, respect, and transparency in selecting and using the technique, we are
more likely to achieve the aim of building relationships or social capital trust, openness, and
communication.
Techniques for sharing information

Techniques for sharing information are generally either part of an awareness campaign or an
information/education programme.
Awareness campaigns are usually conducted along with a participatory process: the purpose is
to make people aware of the opportunity to learn more or get involved. For example, a community initiating a long-range plan banning the use of cosmetic pesticides might start by conducting
an awareness campaign to alert people to the project.
An information/education programme is designed to educate people on a particular topic. An
example is a national campaign conducted by government to educate citizens about food and
physical activity guides to promote healthy active living.
The difference between these techniques is that while awareness campaigns are geared to
getting peoples attention, they convey little information. Education programmes provide information intended to help influence behaviours and should be sensitive to the complexity and
language used as well as how it is received.
Public engagement strategies

Various strategies can be employed to reach out to stakeholders, raise their awareness, gain their
insights, and build common ground and active support for cancer control plans. Where one is
more efficient, another leads to greater public buy-in, while yet another is better at gaining media
attention. Specifically, we will discuss the following public engagement strategies:
Focus groups and surveys
Stakeholder dialogues
Community forums
Focus groups
Focus groups essentially, small-group research interviews are a tool that can accomplish some,
but not all, of the goals of public engagement. They are an efficient means to inform the planning
team of the priorities and concerns of various stakeholders. Focus groups can help planners
understand the publics starting point, frame the relevant issue, develop background materials,
become aware of potential hot-button issues that can derail the dialogue, prepare moderator
training materials, etc. Examples are given by the Public Agenda Engagement Resource Center
[6,7] (www.publicagenda.org). But, while focus groups achieve some public engagement goals,
they do not achieve them all. They provide a reading of peoples state of mind, but do not, by
themselves, help advance thinking. They can illuminate confusion but not constitute the communication needed to correct it. They can distinguish issues that the public are willing to delegate
to professionals from those they want to have a say in, but do not help communities work through
those differences to build the common ground and collaborations. Nor does focus group research
provide the public vetting of a solution that helps legitimize it. Planners can always argue that
they received good input from many stakeholders via focus groups, and that this was incorporated into the thinking and planning; but as focus groups are a controlled process, not a public
one, the outputs from them can easily be questioned. The strengths of focus groups include:
They are an efficient way to gain input from the community, to refine plans, communicate
about them more effectively, and prepare for more ambitious public engagement.
They are a relatively controlled process, in that the information can easily be managed by the
planners.
Among the disadvantages are:
Focus groups do not do much to legitimize the plans presented to them.
People are unlikely to accept them as a democratic process.
They require resources and expertise to do well.
Stakeholder dialogues
Focus groups keep control in the hands of those who organize and lead them. In focus groups, for
example, people are often paid to attend. By contrast, stakeholder dialogues are by nature a less
controlled process. Participants are not selected subjects; they are peers, citizens who are voluntarily contributing their time and ideas. Compared to focus group participants, they will feel less
constrained about commenting to others including, perhaps, the media, about what it is they
have discussed.
These sessions can be with highly homogeneous groups such as patients only, or a wider
group, as in the example of the UK-based all-party parliamentary group that organized an annual
Britain Against Cancer event [8] for patients, health professionals, and policy-makers (Box 16.1).
In either case, the purpose is to engage people in productive dialogue about an issue of shared
interest, to elicit their level of interest and ideas about how to make it work.
The strengths of stakeholder dialogues include:
They allow the organizers, as with focus groups, to target specific groups that are most important to the work.
They are inexpensive and require limited expertise.

Drawbacks, limitations, and challenges of stakeholder dialogues include:
They require time and care to do well.
They do not raise general awareness and engagement across the community as effectively as
community forums will.
Community forums
These are opportunities to engage a broad cross-section of the community in dialogue, including
both specific stakeholders and average citizens. A Canadian example is shown in Box 16.2 [9].
They include more of the public than the engagement strategies discussed so far, as these can be
large-scale civic events to include all sectors of the community on the issue at hand. The basic
principles for community dialogue are:
Non-partisan sponsors and organizers
Diverse cross-section of participants
Small, diverse dialogue groups
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Box 16.1 Example of a stakeholder dialogue: from the

United Kingdom
Updating the national strategy for cancer
In the United Kingdom, the All Party Parliamentary Group on Cancer (APPGC) was founded
in 1998 to keep cancer at the top of the political agenda, and to ensure that policy-making
remains patient-centred. It brings together members of parliament and peers from across the
political spectrum to debate key issues and campaign together to improve the national cancer
plan and cancer services. APPGC organizes an annual event, Britain Against Cancer that
for the past eight years has successfully brought together patients, health professionals, and
policy-makers to look at the impact of public policy on cancer services and research.
According to Dr Ian Gibson MP, Chairman of APPGC in 2007, The original National
Health System Cancer Plan, launched in 2000, led to improvements in front line cancer
services. The cancer landscape has changed dramatically since then but health inequalities still
persist. A new, holistic vision that creates patient entitlements to standards of care covering
the whole patient pathway is needed.
Early in 2007, APPGC launched its new vision for the future of cancer services. The vision
focuses on bridging the gap between health and social care; educating professionals and the
public; improving prevention, diagnosis and treatment; researching genetics, the causes of,
and treatments for, cancer; and producing national standards and specifying entitlements that
people with cancer can expect from health and social care services. A few months later, at the
Britain Against Cancer event held in December 2007, the Government announced its commitment to an updated national strategy which will include, as top priorities, strengthening
prevention and early detection, as well as reducing inequalities and improving cancer services
for treatment, care and rehabilitation.
From: Britain Against Cancer, reproduced with permission [8]. http://www.macmillan.org.uk/Get_
Involved/Campaigns/APPG/cancer_news_in_parliament.aspx.
Non-partisan discussion materials that help participants weigh alternatives
Trained moderators and recorders
Forum follow-up
These elements will help create participative, productive, inclusive, and effective community
forums.
The strengths of community forums are:
They will tend to reach the largest number of people and to gain the broadest input.
They can generate positive press coverage and raise general awareness.
They bring new ideas, resources, and partners to your initiative.

Disadvantages of a public forum strategy are:
They are labour intensive and require significant lead time to recruit participants.
Organizers, if not already experienced in public forum work, will need technical assistance to
create useful discussion materials, develop organizing strategies, train moderators and recorders, and form plans for moving from dialogue to action.
They are not one-time affairs: organizers must be prepared to follow up.
Box 16.2 Example of a community forum from Canada

A successful nationwide advocacy campaign to control cancer
The Campaign to Control Cancer emerged from a forum of more than 70 leading cancer
organizations of Canada. The campaign engaged the public, raised public awareness of cancer
control nationwide through prominent media advertisements, and galvanized grassroots
advocacy and media support.
The campaign was launched to educate political leaders about cancer statistics and the need
for sustainable commitment of pan-Canadian cancer control efforts. Leadership training
workshops were set up to train groups across the country in advocacy skills, to enable them to
mobilize government support through an integrated strategic plan for stakeholder, government, and public relations. Workshop participants followed up by meeting with elected
officials, wrote letters to the newspapers, circulated petitions, and engaged their organizations
in the effort to fund and implement the Canadian Strategy for Cancer Control. At the same
time, a national newspaper media campaign raised the profile of the cancer situation and
engaged the public in knowing about the need for a national strategy. Once the media seized
upon the topic, multiple stories began to unfold on national radio, newspaper, and television,
gathering public responses through letters and calling political attention to the need for a
national strategy.
These advocacy actions culminated in the governments commitment to fund the Canadian
Partnership against Cancer. Two measures that may indicate success of the advocacy include
the formal funding commitment in the federal budget, and the establishment of an independent structure to administer the funding and implementation of the strategy.
From: Campaign to Control Cancer in Canada, reproduced with permission [9]. http://www.
controlcancer.ca.
Principles for public engagement

Many traditional leaders view cancer control and public policy decision-making as an expertdriven process: get the best information, bring trained minds to bear, make the best decision, and
only then reach out to wider audiences to persuade them to sign on and change public health,
individual behaviours, and communities. The wider public are rarely viewed as a vital resource.
From this perspective, planning and decision-making are confined to a small circle to make
progress quickly and minimize static. There is sometimes a nod towards gaining a degree of
input from patients/advocates/families/customers or the public. An advisory committee,
perhaps, a questionnaire, or some form of public consultation might be put in play. In the best
case, these minor measures add a small degree of useful input and lend some legitimacy to the
planning process. More valid principles for public engagement are described here, based on the
work of Friedman and colleagues [6,7].
A mutual struggle for solutions

Authentic engagement involves substantive give and take with those who have a vested interest
in the decisions that are made. It involves communication aimed at prompting deliberation, dialogue, shared responsibility, and cooperative action. In the cancer control context, authentic
public engagement means involving many sectors of a community to build common ground that
will benefit the public interest. It presupposes more collaborative relationships between cancer
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control leadership and various stakeholders and public than is typically the case. An authentic
public engagement perspective assumes that many stakeholders can and should be involved, not
in every technical detail of research and public policy, but in helping to set the broad directions
and values from which policy proceeds. It assumes that many members of the community can
play a vital role in making cancer control work.
To be clear, to promote public engagement, as this chapter does, is not to argue that all members of the community should have an equal say in every aspect, and that traditional cancer control leadership and professional expertise no longer count. Nor would we recommend ignoring
more traditional communications efforts, which remain absolutely essential. But there can be an
important place for well-designed public engagement.
Principles described here are intended to provide non-government organizations, advocates,
public health professionals, and community leaders with a science base and practical guidelines
for engaging the public in community decision-making and action for health promotion, health
protection, and disease prevention. Engagement principles can be used by people in a range of
roles, from the chief executive of an organization or programme funder who needs to know how
to support community engagement, to the frontline health professional or community leader
who needs hands-on, practical information on how to mobilize members of a community.
In practice, engagement is a blend of science and art. The science comes from sociology, political
science, cultural anthropology, organizational development, psychology, social work, and other
disciplines with organizing concepts drawn from the literature on community participation,
community mobilization, constituency building, community psychology, cultural influences,
and other sources. The art comes from the leadership skills, understanding, skill, and sensitivity
that are used to apply and adapt the science in ways that fit the community and the purposes of
specific engagement efforts.
Engaging how? General principles and guidelines

We will set this next section as advice to cancer control leaders who want to engage a wider public
successfully.
Bring people into the process early

If you are simply bringing people together to announce your intentions, youre likely to turn
them into critics. If you bring them together to gain their perspectives as you are developing
plans, you are more likely to turn them into allies. If youve fine-tuned your plan based on useful
feedback, and given a good number of people a chance to weigh in and contribute, youll be in
a solid position to continue to engage stakeholders to help you figure out the best ways to
implement the plan and keep things moving in the right direction.
Go beyond the usual suspects

While its fine to consult with the most accessible community leaders (the village elders), and its
inevitable that youll be dealing with interest groups and civic activists, public engagement should
always strive to reach beyond the usual suspects to include those not typically involved. In short,
public engagement is more useful, and tends to be considerably more interesting and fun, if you
can bring fresh faces, energy, and ideas to the table.
Listen more, talk less

While you will surely have some important things to say, public engagement is not well served by
speechmaking. The idea is to set the stage for dialogue, and you will get more out of it if you listen
more and talk less than anyone else.
Set a constructive, problem-solving tone

Avoid easy polarization, accusations, and stridency. Get beyond sounding the alarm to create
discussions that have forward momentum. This also means that you should look to engage people
using their interests, concerns, and language and avoid jargon completely.
Avoid overly technical discussions

Focus on broad policy directions and the values and trade-offs rather than technical details of
policy. Avoid the data-dumps (giving too much technical information) that may work at a professional conference, but may make it impossible for regular citizens to participate effectively.
Offer choices for deliberation

Let people wrestle with alternatives, and point out the pros and cons. Doing so communicates
that there are no easy answers and many points of view are essential and welcome. This technique
(that Public Agenda calls choicework) [7] also helps people with very different levels of expertise
engage both the issues and each other more effectively than a wide-open discussion with no
structure. Based on Public Agendas long experience with public engagement, this is one of the
most important steps you can take especially with average citizens as opposed to professionals
and experts.
Expect obstacles and resistance

People are used to doing things in a familiar way and its hard to grapple with new possibilities.
It takes time, and repeated opportunities, for people to really work through problems, absorb
information about the tradeoffs of different approaches, and build common ground.
Ongoing communication and follow up is critical

Once youve elicited peoples interest and participation, its extremely important to follow up
with them. It means you need to take participation seriously, explain in what ways participation
has affected your plans, how things are proceeding, and how they can stay involved over time.
Dan Yankelovichs Coming to Public Judgment [10] gives a fuller discussion of the seven stages
people go through as they wrestle with issues.
New trends in public engagement and stakeholder relations

With increased scrutiny from a broader circle of stakeholders along with heightened expectations
for transparency, accountability, and participatory decision-making, we are witnessing a new
approach to stakeholder and public engagement. Today, engagement is a must-do practice
across sectors, regions, and disciplines. This traditional model of stakeholder management is
giving way to a more proactive, participatory, and collaborative model, one that is emergent,
co-creative, and solution-centric in nature (Figure 16.5).
As a result the new approach to stakeholder engagement is:
Collaborative
Emergent and solution-centred
Focused on building long-term, yet flexible, relationships
Illustrative of mutual benefit, risk, and involved decision-making
Inspired by values
Driven by a commitment to a shared vision and mutual goals
Built upon dialogue, listening, and two-way communication
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Stakeholder management
Stakeholder network engagement
Unilateral or bilateral
Multilateral or system-wide
Inform & consult
Involve & empower
Reactive, compliant, & responsive
Proactive, engaged, & co-creative
Organization-centric
Solution-centric
Managed & controlled
Self-organizing around common issues
Independent, fragmented, & ad hoc
Interdependent, complex, & cross-boundary
Fig. 16.5 Trends in stakeholder engagement

Source: From Addis & Associates, reproduced with permission.
Includes a level of trust
Fosters innovation and collective action
Fostering a collective understanding of a vision for wide-spread cancer control amongst key
stakeholders from the outset is essential to ensure the successful realization of the goals.
Introducing community leaders and decision-makers to the concept of cancer control, cultivating
receptivity and support amongst health professionals, advocates, survivors, corporations, schools
and community groups, enabling key stakeholders to be champions, and involving the broader
community are factors critical to success. Consultation, informed dialogue and decision-making,
and joint action are essential to realize meaningful engagement.
A good example of a multi-faceted community engagement campaign is the US programme on
childhood cancer built around the TV film A lion in the house (http://mylion.org). With many
partners and advisers, including the Independent Television Service, the Public Broadcasting
Service, the American Cancer Society and many other cancer groups, and the National Cancer
Institute, it aims to inform and educate the public about childhood cancer, empower survivors and
assist their families, and encourage community volunteer activities. The methods include discussion
materials based on the film, fact sheets, video modules, newsletters, a blog, a community service kit
for teenagers and their leaders, and awards certificates for new activities registered on its website.
What is a stakeholder?
A stakeholder is anyone who is affected or can affect the outcome of the initiative and has an
interest or a stake in cancer control. Those who have been touched by cancer, those who care for
people living with cancer, those who set cancer care policy, or those who financially support
control efforts are just some of the stakeholders to be engaged.
Steps to Engaging Key Stakeholders:
Identify key stakeholders, assess common ground, and encourage ideas.
Develop a shared vision and mutually defined goals.
Learn together and plan together.
Act together.
Strengthening organizational capacity for public engagement

through applications of technology
As use of the internet continues to grow, innovative technologies are creating new ways of
engaging and maintaining the publics involvement in cancer control. Advances in technology
have opened the door to reaching new constituencies, creating spaces for sharing ideas and taking
action, and offering opportunities for increased communication. Public engagement can be significantly advanced through the use of online surveys, internet forums, blogs, social networking
and virtual communities, and group communication tools.
Online surveys
Online surveys provide a mechanism for connecting with the public and learning more about
their knowledge, attitudes, and behaviours related to cancer control. A number of online survey
tools, such as surveymonkey.com and zoomerang.com, offer the ability to survey, analyze, and
share results. With the increase in the number of people using the internet, more people can now
be reached through online methods.
Online surveys offer an inexpensive way to tap into the interests and perceptions of the public.
Surveys can be generated to evaluate many different aspects of work, including but not limited
to: peoples awareness of certain initiatives, the publics engagement in activities, public priorities,
and public responses to certain proposals. Prior to surveying members of the public, there should
be a commitment to use the survey results in decision-making. If the publics opinions are sought
but not acted on, it can create distrust and reluctance to engage in related activities in the future.
However, engaging the public in this way can have many benefits.
The strengths of online surveys include:
They are inexpensive and easy to create.
They provide an easy pathway for engagement by the public, as responding is usually easy and
requires a very brief time commitment.
They facilitate the use of survey results in the decision-making processes by providing tools for
analysis and the ability to share the results with others.
They can build commitment to decisions, as more people have the ability to have their voices
heard.
They can help to illuminate difficult issues, as people often feel free to express sentiments they
would not express in a public meeting.
Drawbacks, limitations, and challenges of online surveys include:
To get the information needed, skilled personnel may be needed to help formulate the questions appropriately.
If people can respond anonymously, it will be challenging to follow-up with anyone on their
comments and responses.
Online survey respondents may represent only a segment of the population, which may not
be representative.
Internet forums
Internet forums are an online place where people have discussions over time on particular topics.
They are generally organized by category or topic and may also be referred to as message boards,
web forums, discussion boards, discussion forums, discussion groups, or bulletin boards. Forums
can be open to the public or password protected for members only.
Internet forums can enhance communication and support the open flow of ideas. They can be
used to spark discussion on certain elements of cancer control, to share best practices and lessons
learned, and to raise awareness around priority topics. They provide an easy access point for the
public to engage in the discussion as all that is necessary for the user is a computer and internet
access. While internet forums can help generate discussion and provide guideposts, an important
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limitation is that the ideas expressed in the forums may not be representative of the larger
population.
The strengths of internet forums include:
They can create a sense of community.
They can give people a reason to return to the website and stay engaged.
The interactive nature of forums makes the subject area both interesting and informative and
can attract new people to participate.
They can expand the exchange of ideas by attracting people beyond the usual suspects.
Drawbacks, limitations, and challenges of internet forums include:
They require an investment of resources, time, and energy in creating, moderating, and ensuring the forum is both engaging and up to standard.
The organizers will have less control over the messages or what is said about a particular aspect
of the cancer control efforts. Because these are public forums, the views expressed may not
represent those of the organizers. While the goal is to encourage the expression of multiple
viewpoints, if the views expressed are volatile or irrational, this can reflect negatively on the
host organization. Despite disclaimers that may be in place, perception can be reality in the
public domain, and the organizers may find themselves having to defend the opinions of
people whose views are significantly outside the mainstream.
Public forums may be dominated by vocal minorities. Because of the anonymous nature of the
internet, certain users can create drama and cause problems. Forums must be moderated not
only for personal attacks, but for accuracy of information presented, and conflicts between
product marketing and actual communication. Careful moderation of public forums is
critical.
Organizations can choose whether to host their own forums or participate in existing ones.
Hosting a forum on the organizations website provides the added benefit of drawing people
to the website again and again. However, existing internet forums can provide a good venue
to promote discussion around areas of cancer control that are relevant to the developing
plans. The task with this strategy is to find a forum that fits with the area of interest and to
introduce discussion topics as appropriate.
Blogs
Blog is short for web log. Blogs are interactive in nature in that they allow readers to post comments. Increasingly, individuals use blogs to share information, provide commentary, or provide
updates on new events. There are multiple ways in which blogs can be used to engage the public
in cancer control. Organizers may:
Create each blog entry themselves.
Create the blog and invite others to post guest blogs.
Encourage those who are engaged to blog independently.
Which strategy is chosen will depend on the resources and staff time available, as well as the
interest of the community. For the greatest level of public engagement, members of the public can
be invited to post guest blogs and encourage all others to respond in the comments section.
Reader comments are a critical component of blogging. Comments can point the way towards
elements of planning that may be controversial, unsupported, or require more dialogue.
Organizers can also use the comments to their blog in helping identify where to focus future
efforts in public engagement.
As with internet forums, it is important to remember that those who participate in reading and
responding to the blog do not represent the totality of the public. While internet access is increasing, those who are willing and able to participate in blog posting may be just a small segment of
those who are interested in participating in cancer control planning overall.
The strengths of blogs are:
Blogs are inexpensive to create, operate, and maintain.
Blogs provide a way of speaking to the public in a direct, conversational tone that can help
increase involvement and better inform those who might not otherwise participate.
Because blogs are personal in nature, they allow organizers to build long-term relationships
with readers that foster trust.
Blogs can link to multiple sites allowing people to learn about efforts across the cancer control
spectrum. Because comprehensive cancer control often involves multiple stakeholders engaged
in a myriad of activities, the interactive and linked nature of blogs allows people to access
information on multiple levels.
Drawbacks of blogs include:
Blogs should be updated frequently, requiring ample time and content.

Reader comments require moderation to ensure they are appropriate and directed to the
goals.
Those who write and respond represent a small portion of the public.
Social networking and virtual communities

Social networking sites connect individuals online in an interactive way. They generally offer a
space for blogs, user profiles (a profile that a person creates that tells others about themselves),
forums, chat groups (a mechanism for people to discuss a topic in real time online), and photos.
Social networking groups can be used to connect people from diverse areas who are interested in
similar aspects of cancer control. They provide a fun, social environment to engage people in the
fight against cancer. If a call to action does not exist, blogs or internet forums can be considered
as a substitute.
For example, the Lance Armstrong Foundation uses social networking groups as a tool for
groups of advocates in specific geographical regions to connect with each other, share information about events, and draw in new participants [1]. Advocate teams each create their own sites
and then invite members of the public to get involved with their efforts.
The strengths of social networking and virtual communities include:
Online communities allow people to stay closely connected.
They enable people in distant locations to stay connected without travel or oddly timed phone
calls.
They increase awareness and aid in recruitment by providing an easy way to spread the word
and get others to join in.
Many people who are comfortable with this medium have existing online networks from
which they can draw.
Drawbacks, limitations, and challenges of social networking and virtual communities include:
They do not have universal appeal.
It is important to balance the time and resources devoted to these strategies with the reach
they have in the community being engaged.
Content is user-generated so there is no control over what is said.
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Group communications tools

Group communications tools are a way to manage information and activities of a group. Examples
of group communications tools include web conferencing, bulletin boards, list servers, the Wiki
Wiki Web system, which is a set of Web pages where anybody can modify the contents using
standard Web browsers and mailing list management systems. Many group communications
tools offer free list-management, emailing services, calendar tools and mini-database services.
Recent improvements in group communications tools allow people to network, hold meetings
and discussions, make decisions, revise documents, send newsletters, and schedule tasks.
For example, www.cancerplan.org provides tools for cancer control planners to share resources
in order to effectively develop, implement, and evaluate comprehensive cancer control plans.
Guests can use the site to see what is happening in cancer control planning in their state in the
United States, find local resources, or participate in the message board.
Online group communications tools provide a simple and easy way to keep people informed,
sign up new members, and manage projects. They can be particularly useful as a way to allow
work groups to continue to plan strategies between in-person meetings. They can be set up to give
anyone access to the tools or to allow certain work groups access to certain tools.
The strengths of group communications tools include:
They allow people to participate in ways that are meaningful to them. As people are engaged
in the process, they will be able to choose how to participate. Some people may choose to stay
informed by reading a newsletter, some will share tools and exchange stories, while others will
join work groups.
Group communications tools can foster a sense of shared purpose. If all members of the group
are given access to the tools, people can clearly see who else is involved in the effort, how they
are providing support, and how their individual efforts connect to the greater whole.
They allow people to continue to connect despite great distances.

Drawbacks, limitations, and challenges of group communications tools include:
Group communications tools can be costly to host, create, and monitor.
Because the tools are internet based, there will be limitations on the number of people who can
participate.
Developing influential public and private sector cancer control

leadership skills
Whether you are a cancer care professional, patient, policy maker, a staff member of a cancer
hospital or charity or just a person who wants to make a difference you probably wish you had
more influence over people. Most of us stop trying to make change happen because we believe
it is too difficult. We develop complicated strategies when we should be learning the tools
and techniques for effective influence. Behavioural scientists and business leaders offer robust
strategies for making change happen, and cancer control can benefit from learning how to:
Identify a handful of high-leverage behaviours that can lead to rapid change.
Apply strategies for changing thoughts and actions.
Marshal sources of influence to make change inevitable.
For example, in developed countries unhealthy diet, obesity, and inactivity are major factors
in the increase in cancer incidence and mortality. But there is good news that shows that if we
make good eating and active living choices a little easier and bad ones a little harder, we can make
a substantial impact on individual choices (see also Chapters 2 and 3 in this book).
As an example of a Best Practice school-based approach, the Gimme 5 intervention in US

high schools involved (www.gimme5.org; www.gimme5.ca):
A mass media campaign in schools
Five 55-minute workshops per year about healthy living knowledge, attitudes, and skills
More fruits and vegetables in the cafeteria
Mailings to parents with recipes, calendars, tips, and information brochures
As a result of the three-year high school programme, students increased their consumption of
fruits and vegetables by over 2.5 servings per day on average [11].
Leadership in cancer control doesnt always require clinical expertise or expense. Corporate
and public sector employers can help create working environments that promote healthy living
[12]; an example is given in Box 16.3.
Best Practices in workplace cancer control include the following efforts:
1 Develop a corporate culture that values and supports healthy eating, physical activity, and
employee wellness.
2 Audit the workplace to assess available food choices, and opportunities for physical activity.
3 Plan Health Days: quarterly events that focus on aspects of healthy weights and healthy
living.
4 Implement strategies to help people be more physically active at work, such as:
Building a task team to identify ways to increase physical activity opportunities
Allowing employees time to be physically active during the day
Adjusting working hours to allow parents to walk their children to school
Providing physical activity facilities, programmes, and incentives
5 Identify and implement strategies to promote healthy eating at work, such as ensuring
vending machines and cafeterias offer healthy choices.
6 Develop a policy to support women returning to work to continue breastfeeding.
Box 16.3 Example of best practices in workplace cancer control:

the CEO Roundtable
The CEO Roundtable on Cancer was founded in 2001 to enable executives from diverse
industries to engage in the fight against cancer. Members from workplaces across the United
States collaborate to develop and implement initiatives that reduce the risk of cancer, enable
early diagnosis, facilitate better access to best-available treatments, and hasten the discovery of
novel and more effective diagnostic tools and anti-cancer therapies.
As part of this initiative, the CEO Cancer Gold Standard was created to help establish a
roadmap that companies can use to help prevent cancer, detect it early and ensure access to
the best available treatment for those who are diagnosed. The CEO Cancer Gold Standard
allows companies to affirm their commitment to fighting cancer, to easily assess their own
readiness to implement recommended strategies, and to become accredited.
From: CEO Roundtable on Cancer Control, reproduced with permission [12]. http://www.
ceoroundtableoncancer.org/.
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Conclusions
Complex public health campaigns such as those required in cancer control should never be
undertaken without first doing the necessary groundwork, including public engagement and
developing a twenty-first century communications plan. As an example, the Indonesian cancer
control programme illustrates the synergistic role of government, non-government organizations, cancer patients and their carers and supporters, and health professionals in developing and
implementing a comprehensive programme [13] (Box 16.4). This is an example that is matched
by many other functioning or developing programmes.
Box 16.4 Community involvement in comprehensive cancer

control in Indonesia
The Integrated Comprehensive Cancer Control Programme was established in 1993 by the
Indonesia Minister of Health and was adopted by Jakarta province in 1996. One of the basic
components of this programme is the Population-Based Cancer Control programme which
aims at improving peoples knowledge through education, focusing on prevention, and early
detection of the most important cancers.
The Indonesian Cancer Foundation (ICF) was established as a non-governmental organization to assist the Government of Indonesia in cancer control by promoting awareness, early
detection, public and professional education, research, and giving aid to needy cancer patients
to reduce their suffering. The foundation works mainly through community participation and
in cooperation with other cancer-related institutions.
The ICF Population-Based Cancer Control programme is meant for the people, is carried
out by the people, and serves the people. It involves large numbers of volunteers who come
from all sectors and disciplines in the communities, such as health-care providers, government officers, social workers, private employees, self-employed persons, and housewives. PKK
includes women from the smallest communities at village level up to the provincial level,
whose aim is to increase the welfare and health of their communities. The PKK cadres and the
primary health centres in villages help to select other volunteers. The criteria for selection are
spare time and willingness to teach and help others.
The volunteers are informed about the 10 most common cancers in Indonesia: the risks;
general treatments and rehabilitation; and the primary and secondary prevention. They are
also trained in how to motivate other people.
Home Palliative Care Programme helps terminally staged and incurable patients, in their
own homes to improve the quality of their lives. Training is done by specialists, psychologists,
the Population-Based Cancer Control team and others. After the training, the volunteers are
called Population-Based Cancer Control teachers if they can demonstrate their ability to teach
or inform other people about public health aspects of cancer. The Population-Based Cancer
Control programme has support and receives funds from the Governor of Jakarta (mostly)
and foreign foundations and institutions.
From: Indonesian Cancer Foundation, reproduced with permission [13]. http://2006.confex.com/uicc/
uicc/techprogram/P10602.HTM.
REFERENCES
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controlcancer.ca/en/news/nclf-events.
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macmillan.org.uk/Get_Involved/Campaigns/APPG/cancer_news_in_parliament.aspx. Also cited on
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12 CEO Roundtable on Cancer (2008). Cancer Gold Standard. URL:http://www.cancergoldstandard.org
13 Indonesian Cancer Foundation (2006). Community involvement in cancer control in Indonesia. Available
from: http://2006.confex.com/uicc/uicc/techprogram/P10602.HTM.
Additional resources
Public engagement
Barber B (1984). Strong Democracy: Participatory Politics for a New Age. University of California Press,
Berkeley and Los Angeles.
Coleman, S & Gtze, J (2001). Bowling Together: Online Public Engagement in Policy Deliberation. Hansard
Society. Available from: http://www.bowlingtogether.net/references.html.
DialogueCircles (Ascentum). Available from: http://www.ascentum.ca/dialoguecircles.
Gauvin, F & Abelson, J (2006). Primer on Public Involvement (prepared for the Health Council of
Canada). CPRN. Available from: http://www.cprn.org/en/doc.cfm?doc=1519.
Gastil, J & Peter L (eds). Strategies for effective civic engagement in the 21st century. The Deliberative
Democracy Handbook. Jossey-Bass Publishers, San Francisco. In particular see Chapter 19 Future
Directions for Public Deliberation by Levine, Peter, Archon Fung, & John Gastil.
Goldman, J & Lars HT (2004). Approaches to public engagement in the US. AmericaSpeaks. Available from:
http://www.americaspeaks.org/.
Gutmann, A & Thomson, D (2004). Why Deliberative Democracy? Princeton University Press, Princeton,
New Jersey.
Matthews, D & McAfee, N (1997). Making Choices Together: The Power of Public Deliberation.
Charles F. Kettering Foundation, Dayton, Ohio.
Phillips, S & Orsini, M (2002). Mapping the links: citizen involvement in policy processes. CPRN.
Available from: http://www.cprn.org/en/doc.cfm?doc=169.
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Public Agenda Center for Advances in Public Engagement. http://www.publicagenda.org/cape.

Royal Roads University e-dialogues for sustainable development. http://e-dialogues.royalroads.ca/.
Yankelovich, D (1991). Coming to Public Judgement. University of Syracuse Press, New York.
How-To-Guides for public involvement

Building Democratic Governance: Tools and Structures for Engaging Citizens (2005). National League
of Cities. Available from: http://www.nlc.org/ASSETS/6B83BE044C544D4AA963D48B884434FF/
demgov.pdf.
Core Values of Public Participation; Public Participation Toolbox: Techniques to Share Information.
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associations/4748/files/toolbox.pdf.
Creighton, JL (2005). The Public Participation Handbook: Making Better Decisions through Citizen
Involvement. Jossey-Bass Publishers, San Francisco.
Harrison, O (1997). Open Space Technology: A Users Guide. 2nd ed. Berret-Koehler Publishers, Inc.,
San Francisco.
Lukensmeyer, CJ & Lars HT (2006). Public Deliberation: A Managers Guide to Citizen Engagement.
AmericaSpeaks. IBM Center for The Business of Government. Available from: http://www.
businessofgovernment.org/pdfs/LukensmeyerReport.pdf.
Chapter 17
Organizational structures for

cancer control
Lorraine Caron1
In the past, governments at all levels have viewed cancer as a disease to fight through treatment and
care. Over the years, a more global approach to fighting cancer has emerged, supported by evidence
that cancer could be prevented. Indeed, it has been estimated that about one third of cancers worldwide could be prevented with the implementation of existing knowledge and strategies in health
promotion, prevention, and screening [1]. When cancer cannot be prevented, a treatment
programme is implemented that usually combines supportive care, and in less fortunate circumstances, palliative care for terminally ill patients. If treatment is successful, cancer management
generally evolves towards rehabilitation, including regular check-ups and promotion of a healthy
lifestyle to prevent recurrence of the cancer or the development of a new cancer [2].
Cancer control and the management of chronic conditions both challenge health care systems,
wherein the primary focus is to respond to acute problems. A more adapted response to individuals with complex and chronic conditions requires making a paradigm shift in the way that health
care systems operate and interact [3]. Such a shift has direct implications for patients, families,
health care workers, as well as organizations, communities, and health policy makers.
The complexity and chronic nature of many cancers has called for a comprehensive approach
that is defined as cancer control. Cancer control is a systematic and evidence-based approach that
seeks to encompass the continuum of cancer care [4], as well as health professional and public
education, research, and epidemiological surveillance. Cancer control involves the identification,
development, promotion, diffusion, and delivery of effective and ethical cancer prevention,
screening, and care services and programmes for individuals and groups, always with their active
participation [5],(p. 1141).
Table 17.1 illustrates this conceptual evolution towards a cancer control perspective, highlighting the salient features of that progression that bear upon health care systems, namely: (1) the
target populations; (2) the structural features related to service delivery; (3) the level of integration
related to service provision; and (4) the management focus [6]. Hence, moving from cancer treatment to cancer care and to cancer control entails an ever more embracing approach that requires
significant changes in health system configuration and practices: from a hospital-based to a systembased delivery setting; from a focus on discrete episodes of care to the notion of continuum of care;
from providing treatment to promoting health and preventing disease; from caring for individual
patients to ensuring healthy populations; and from working in silos to linking systems. To address
this ongoing challenge, comprehensive cancer control initiatives guided by well known frameworks [3,7] are being established through concerted stakeholders collaborations that include
government, non-governmental organizations, as well as public/patient representatives [8].
1
Lorraine Caron, PhD, Consulting Researcher, Agence dvaluation des technologies et des modes
dintervention en sant (AETMIS), Montral, Qubec, Canada.
318
ORGANIZATIONAL STRUCTURES FOR CANCER CONTROL
Table 17.1 From cancer treatment to cancer control: requirements for health care systems
Approach
Cancer treatment
Cancer care
Cancer control
Target populations Patients diagnosed Patients diagnosed with

with cancer
cancer and individuals
suspected of having cancer
Multiple populations: healthy,

at-risk, suspected of cancer,
diagnosed with cancer,
in remission, at the end-of-life
Structural features
related to service
delivery
Patient navigators
Networks of providers within
and across regions
Integrated care programmes
at local, regional, national
levels
Inter-sectoral (e.g. health and

education) and intra-sectoral
(e.g. public health and health
care system) collaborations
Systemic approach to knowledge
formation, exchange, transfer,
and application
Participatory decision-making for
patients and the public
Level of integration Integrated care

in service provision protocols
(care episode)
Seamless trajectory of care

across services and places
(continuum of services)
Linkages among public health,

health care delivery system, and
community services
(health system)
Management focus Institutional (silo)
Continuity and coordination

of health care services
(transitions between
services and places)
Health system performance

(sustainable, responsive, and
efficient health system)
Facilities: centres
and hospitals
Table adapted from [6]
Learning from international comparisons

The present chapter reports on the experiences of a number of jurisdictions in planning and
organizing cancer control strategies, plans, and programmes at the national and provincial levels.
It is based on a comparative study conducted between 2003 and 2007 for the Qubec Ministry of
Health and Social services that examined four countries (Canada, England, France, and
New Zealand) and five Canadian provinces (Alberta, British Columbia, Nova Scotia, Ontario,
and Qubec) [6,9]. The study sought to provide a broad understanding of cancer control strategies, plans, and programmes in terms of how those initiatives came into being (development
history) what they intended to achieve (design), how they were managed (governance), what they
achieved and how (implementation), and what contextual factors may have been shaping and
influencing them.
The study compared the selected jurisdictions according to elements of an integrated framework that was specifically built from existing frameworks related to cancer control and the management of chronic conditions [6]. Sources of information included scientific literature, key
informant interviews and grey literature, such as government documents, newsletters, reports,
and experts presentations. The different points along which the selected countries and provinces
rested in terms of planning and implementation, as well as the differences in their social and
political context called for a descriptive inquiry. Comparative analysis consisted in using a
bottom-up approach based on the juxtaposition of detailed information about similar initiatives
in the selected jurisdictions. Given the type and scope of data considered, no assessment of
strategy/programme effectiveness was conducted. However, documented achievements
regarding cancer services organization reforms were used as the basis on which to draw lessons
for improving cancer control strategy implementation [9].
FEATURES OF POLICY DEVELOPMENT
This chapter highlights the central features of this comparative study. It first examines the
influence of critical events in policy development and then describes organizational means that
have been put in place by the jurisdictions to implement the current strategies, plans, or programmes. Focusing on the differences and commonalities as regards to main governing models
and levers for change, the chapter offers some insights on the strengths and challenges of the
various organizational models and on key ingredients for successful implementation.
Features of policy development*

All jurisdictions examined have an interesting history regarding the development of their cancer
control policy. Though taking place in different contexts, such development features have a
number of common threads which are worth highlighting. First, policy development is a cyclical
and iterative process, with more or less successful attempts. Second, successful policy planning
and implementation of resulting plans and strategies require that cancer control be considered a
top priority at the highest levels of government.
For example, the development of the 2002 Canadian Strategy for Cancer Control (CSCC) [10]
was preceded by the Cancer 2000 Report, published ten years before [11] and never implemented.
The CSCC planning and consultation process involved over 700 Canadians from the health and
allied professions, academia, the voluntary sector, all levels of government, and cancer patients/
survivors. Despite such consensus, tremendous efforts had to be deployed by the CSCC council
as well as advocacy and support groups2 to keep the national strategy on the political agenda. In
2006, the newly elected federal government committed substantial funds over five years for the
implementation of the CSCC. The Canadian Partnership against Cancer (CPAC), a new governing organization, was also formed to lead the implementation.
In New Zealand (NZ), work to develop a broad level framework for cancer control dates
back to 1996, but this initiative was slowed down by changes in government and health system
governance reforms. At the end of 1999, a new government was elected, and cancer became
one of 13 priorities of the NZ Health Strategy [12]. A Cancer Control Trust was established in
2001 as a partnership between the Ministry of Health, the Cancer Society of New Zealand, and
other non-governmental organizations. Later that year, a cancer control steering group was set
up, along with a number of expert working groups, to establish priorities following the Canadian
model. One important goal of the strategy would be to improve access and care for the Maori and
Pacific populations that had the worst health outcomes. After a public consultation, the NZ
Cancer Control Strategy [13] was launched by the Minister of Health in 2003. Later that year, a
national workshop was held to begin planning for its implementation. A Cancer Control Taskforce
was set up to produce an action plan [14] that was released in 2005. A Cancer Control Council
was appointed by the Minister of Health to monitor implementation of the strategy, and a principal advisor (now named national clinical director, cancer control) was appointed by the director-general of health to drive the implementation from within the ministry. In 2006, a cancer
control work programme steering group was formed by the Ministry of Health to begin implementation. The group is under the leadership of the national clinical director, and comprises
representatives from the district health boards, the Cancer Control Council, and the Cancer
Society of New Zealand as well as oncology experts and other stakeholders.
See list of acronyms at the end of the chapter for the specific names of the organizations.
These included the National Cancer Leadership Forum, the Canadian Cancer Society (CCS), and the
Cancer Advocacy Coalition of Canada.
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In France, a turning point can be traced back to the signing by President Chirac of the
Paris Charter, a founding text that recognizes the fight against cancer as an international priority,
during the World summit against cancer for the new millennium, hosted by UNESCO in Paris
in 2000. This momentum came after a series of public reports depicting the failure of prior policy
initiatives and the unmet needs of patients [1518]. A programme national de lutte contre le cancer
20002005 had been published by the Minister of Health [19], but it was not implemented due
to lack of funding and leadership. Significant progress began when President Chirac declared
that cancer control would be a top priority following his re-election in 2002. A first step was the
setting up of a Commission dorientation sur le cancer to document the situation. The Commission
benefited from the input of many groups, including patients, health care professionals, and
associations involved in the field. It noted that France had the worst cancer premature mortality
rate across Europe, and that research efforts were not sufficient. The Commissions report [20]
formed the basis for the drafting, by the Minister of Health and the Minister of Research, of
a five-year action plan [21] that was launched by President Chirac in 2003. Implementation
began right away under the governance of a Mission interministrielle de lutte contre le cancer
appointed by the Prime Minister until the newly created Institut national du cancer took over
in 2005.
In England and Wales, landmark efforts at a concerted policy approach to improve cancer care
began with the Calman-Hine report [22] that recommended a fundamental restructuring of
cancer services in England and in Wales, including the creation of cancer services networks.
Impetus for reform in England was largely linked to results from the EUROCARE study, examining five-year cancer survival rates in European countries that demonstrated that England was
faring well below (by 5 per cent) the European average for all common cancers (lung, breast,
colorectal, and prostate) [23]. In 1999, following a specific meeting on cancer with the Prime
Minister and a group of experts (Ten Downing Street cancer summit) [24] important steps were
taken to improve the pace of reform: (1) a target was set of a maximum two-week wait between
an urgent referral from a general physician and a hospital clinic appointment for breast cancer
[25]; (2) a national cancer director was appointed to develop and implement a national cancer
programme for England; (3) the National Cancer Action Team was mandated to support the
national cancer director, in addition to overseeing the implementation of the cancer networks;
and (4) a Cancer Services Collaborative was established to support the National Health and
Social Care Service (NHS) in England and its partner organizations in the task of redesigning
more efficient services and improving experiences and outcomes for patients. In 2000, the
Department of Health launched the NHS cancer plan for England [26]. A Cancer Taskforce
was formed to lead national implementation of the plan, supported by a substantial financial
commitment by the government. Implementation progress was closely monitored. In 2006, the
Secretary of State mandated the national cancer director to head a reform strategy board to
develop the next strategy for cancer services. The Cancer Reform Strategy (20082012) was
launched in December 2007 [27].
As seen already in the stories described, another important characteristic is that the political
willingness to develop and implement a global and concerted approach to cancer control is
triggered by the need to take action on the following problems:
Higher cancer incidence and/or mortality rates and/or lower survival rates compared with
other jurisdictions
Inequalities among social and/or ethnic groups, and/or among regions, whether in health
status or in access to and provision of cancer services
Problems in the quality of cancer care delivered as well as its lack of continuity and coordination
FEATURES OF POLICY DEVELOPMENT
Experiences of several Canadian provinces

Canada is a federation that comprises ten provinces and three territories. The health care sector is
of provincial jurisdiction and the majority of funding for health care is provided by the provinces
through taxation. The federal level provides the general legal framework governing the provincial
health care systems (Canada Health Act) and is responsible for the licensing of drugs. It is also
involved in some public health activities and in the provision of health care to aboriginal people
residing on federal reserves.
In Ontario, initiatives to improve cancer services date back to the early 1990s amidst a crisis
related to long delays for radiotherapy. A public consultation process initiated by the Minister of
Health in 1993 highlighted a number of problems including the lack of service coordination, lack
of clinical practice standards, variations in access to care, and the lack of the patient perspective
in cancer policy planning. The resulting report [28], which can be considered as the first provincial cancer control strategy, recommended the development of a provincial framework to be
implemented through regional cancer networks. In 1997, a provincial cancer agency (Cancer
Care Ontario, CCO) was launched by the Ontario Premier with the mandate to integrate and
coordinate all cancer services in the province. In 1999, however, another crisis occurred regarding
radiotherapy waiting times, which led to the transfer of many patients to the United States for
their treatment. The government formed a cancer services implementation committee to conduct
a thorough review of cancer services delivery throughout the province. The committee recommended important changes to the mandate of the cancer agency [29]. CCO would no longer be
responsible for the direct delivery of care through its regional cancer centers; it would instead be
responsible for planning and coordinating all cancer services across the province in addition to
becoming the advisory body on cancer to the Ministry of Health. In 2002 the Cancer Quality
Council of Ontario (CQCO) was created to serve as the major driver for cancer control performance monitoring, managing, and reporting. From 2002 to 2004, CCO published an assessment of
the quality of cancer services in Ontario [30] as well as a number of strategic plans, including
Cancer 2020, an action plan for cancer prevention and early detection prepared jointly with the
Canadian Cancer Society [31]. In 2004, CCO published the Ontario Cancer Plan 20052008 [32].
The development of this plan involved more than 3000 people across the continuum of care. The
plan was informed by a regional planning process, a corporate planning process, and it also
underwent a formal review by international experts. Significant funding was committed by the
government for implementation of reforms. Building on these new foundations, CCO recently
launched its next cancer plan (20082011) [33].
In Nova Scotia, serious concerns were raised during the 1990s regarding access to, and quality
of, oncology services [34]. At that time, the province had among the highest rates of cancer incidence and mortality in Canada. In 1995, the Department of Health established the Nova Scotia
Cancer Action Committee to develop an action plan for a coordinated and systematic approach to
cancer care. The committees report was submitted to the Deputy Minister of Health in 1996 [35].
This first comprehensive strategy came amidst an important reform in the governance of cancer
services that was marked by the abolition, in 1996, of the provincial organization dedicated to
cancer treatment, surveillance, and research (Cancer Treatment and Research Foundation of Nova
Scotia), and its fusion with the Queen Elizabeth II Health Sciences Centre [36]. In 1998, a provincial programme called Cancer Care Nova Scotia (CCNS) was established within the Department
of Health and a commissioner was appointed to lead the development of this programme. In 2006,
the Department of Health commissioned a provincial health services operational review that
included an assessment of the CCNS programme. The review indicated that, over the eight years
since CCNS had been created, the programme had made significant accomplishments in cancer
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control by developing ambitious programmes and initiatives related to prevention, coordination

of services, clinical practice guidelines, professional education, and research. However, the review
noted a lack of support from the Department of Health (financial resources and delegation of
proper authority) that would have enabled CCNS to enforce the implementation of its programmes, and to adequately assume its monitoring and evaluation mandate [37]. The year 2006
was also marked by two important events: the CCNS commissioner resigned; and an epidemiological survey showed that cancer incidence and mortality rates remained high [38]. In 2007, the
improvement of cancer services was among the four priorities of the Acute and Tertiary Care
branch of the Department of Health [39], with most recent initiatives focusing on cancer screening and on reducing waiting times for treatments [40].
Qubecs comprehensive cancer control strategy was adopted in 1998. Involving the collaboration of more than a hundred stakeholders, the programme qubcois de lutte contre le cancer was
the product of the Comit consultatif sur le cancer [41], established in 1993 by the Minister of
Health and Social Services. In 2003, a progress report noted that, despite existing efforts, important changes were still needed to occur to reduce the cancer burden [42]. Indeed, by the year 2000,
cancer had become the first cause of death in Qubec [43]. These findings gave support to the
Coalition priorit cancer au Qubec, a group of voluntary, community, and professional organizations, created in 2001 to mobilize all stakeholders and the government in advancing cancer control. Since its creation, the Coalition has asked the Qubec government to make cancer control a
priority, to set up a more coherent leadership and management, and to provide the necessary
means to implement the existing programme [44]. In 2003, the newly elected Minister of Health
established cancer as one of his top priorities. The previous cancer governing bodies were
replaced by a Direction de la lutte contre le cancer (DLCC), and the 1998 programme was
reaffirmed. In 2007, the Direction released its five-year action plan [45].
While the experiences of the countries mentioned earlier and Canadian provinces are related to
establishing and implementing their first comprehensive and coordinated strategy on the prevention and management of cancer, in the Canadian provinces of Alberta and British Columbia,
recent policy development is mostly intended to enhance a longstanding provincial cancer
programme.
In Alberta, the Alberta Cancer Board (ACB), a provincial health council created in 1967, is
mandated by the Albertan government to coordinate cancer control research, prevention, and
treatment for the entire province. In 1999, ACB established the Alberta Coordinating Council for
Cancer Control (ACCCC) to foster collaboration among ACB, the health authorities, the
Canadian Cancer Society (CCS), and the Ministry of Health in planning cancer control activities.
ACCCC took the lead in 2002, to develop a provincial cancer control plan. The 2004 Alberta
Cancer Control Plan [46] provides a global and concerted vision for provincial cancer control
that builds on existing cancer control programmes in Alberta, the priorities of the Canadian
Strategy for Cancer Control, and on the recommendations from the Premiers advisory council
on health report [47]. In 2006, the Alberta government committed a 500 million dollar
endowment for research, screening, and prevention through the Alberta Cancer Prevention
Legacy Act [48].
British Columbia (BC) is viewed as a Canadian pioneer in cancer control. For example, it
launched Canadas first cervical screening programme in 1949, which included many components of an organized screening programme [49]. In 1974, existing organizations involved in
cancer treatment and in research, prevention, education, and epidemiology, were amalgamated
under the Cancer Control Agency of British Columbia (now called BC Cancer Agency or BCCA),
through a tripartite agreement of the provincial government, the BC Cancer Treatment and
Research Foundation (which had been created in the 1930s), and the Cancer Control Agency of
FEATURES OF STRATEGY IMPLEMENTATION
British Columbia [50]. The BCCA is mandated to develop and manage a cancer control
programme for the entire province. In 1996, BCCA established population-based provincial programmes that are regionally delivered [51]. In 2001, BCCA was put under the governance of the
Provincial Health Services Authority (PHSA), along with many other existing provincial health
services agencies. In addition to developing its own strategic plan in 2003 [50], BCCA collaborated to several regional and provincial initiatives to improve cancer control in the province,
including: (1) the setting up in 2004 of a BC and Yukon council for the CSCC, jointly financed by
the BCCA, the PHSA, and the CCS, to develop a BC and Yukon cancer control strategy based on
the CSCC; and (2) the production, in collaboration with the Northern Health Authority, of a
strategic proposal for cancer control in the Northern British Columbia region [52]. This latter
initiative was part of the BC Premiers consultation on improved cancer care in Northern British
Columbia that took place in 2005-06. The consultation aimed to design a comprehensive and
integrated cancer care programme that would best meet the unique needs of the people of
Northern British Columbia. While British Columbia has the lowest cancer incidence and mortality rates in Canada, the people of Northern British Columbia have the highest mortality rates in
the province for all forms of cancer [53]. The Premiers consultation final reports recommendations are now being implemented [54].
A final characteristic worth noting regarding cancer policy development is that nongovernmental organizations (NGOs) play an important role in cancer control policy initiation,
development, and implementation in all jurisdictions examined. At the initiation and development phases, NGOs might be involved in producing relevant data on the cancer burden and
cancer services, creating a sense of urgency, mobilizing action, achieving political commitment,
and/or promoting the patient and public perspective through their knowledge of community
issues. In New Zealand, for example, the Cancer Society of New Zealand and the Child Cancer
Foundation formed a partnership with the Ministry of Health (Cancer Control Trust) and
financed a good part of the groundwork for developing the NZ cancer control strategy. The
Cancer Society of New Zealand is also involved in the cancer control work programme, contributing to several projects related to the implementation of the NZ action plan. In Canada, the
Canadian Cancer Society and its research arm, the National Cancer Institute of Canada, were
among the founders of the CSCC. As previously described, the Canadian Cancer Society played a
substantial role in advocating for its implementation. Its provincial divisions are also involved in
advocacy, policy planning, prevention, research, as well as in patient support and information.
This overview of several jurisdictions experiences in cancer control policy development suggests there are a number of essential ingredients or critical events that act as drivers and success
factors for policy development. The recognition by policy makers of important problems regarding the cancer burden, the organization and management of cancer services, and a perceived crisis
situation usually amplified by the media can become strong incentives for change. In any case,
however, the most important factor for success remains the unequivocal commitment of government officials at the highest political levels in making cancer control a top priority.
Features of strategy implementation

Establishing priorities for action
Developing a comprehensive cancer control strategy is the first step that provides the foundation
on which to transform the health care system in order to lessen the cancer burden and improve
the patient journey. Such a strategy sets out the vision, values, and key directions to improve the
situation. It usually follows from a review of existing cancer control activities that have identified
major gaps and formulated recommendations. It may or may not straightaway include the plan
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that sets out priorities for action, including specific objectives, targets, or milestones that are
required to realize the vision. For example, some jurisdictions (Canada, New Zealand, and
Qubec) have first developed a strategy and then its associated action plan, with more or less time
between those steps. Others (England, France, and Ontario) have put forth an action plan.
In the remaining jurisdictions (Alberta, British Columbia, and Nova Scotia) the situation is a
bit different. The Alberta cancer control action plan (2004) does not have a timeline, but the
planned steps to meet the priorities have been included in ACB annual business plans. A similar
approach is taken by the BCCA that has developed a strategic plan in 2003 and whose operational
planning is included in the PHSA annual service plans. Nova Scotias programmatic approach
rests on a report to the Deputy Minister of Health [35], and while CCNS might produce strategic
operational plans, the only publicly available document establishing priorities for action with
clear timeline in relation to the cancer system is the Department of Health annual business plan.
Governing cancer control reforms

The concept of governing refers to purposeful actions to guide, steer, control, and manage public policy [55]. These actions include: the setting of policy visions, goals, and priorities; the
creation of structures and mandates; the allocation of resources; the management of programmes;
the organization of services; the setting of benchmarks and desired outcomes; the monitoring of
progress; and the assessment of results [56].
The jurisdictions reviewed herein have developed varying governing approaches to drive and
manage their cancer control strategies, plans, and programmes. These differences are observed by
examining the public sector actors involved in cancer control management, their roles and
responsibilities, as well as their links of accountability [9]. This section will focus on the varying
ties between the selected jurisdictions Departments or Ministries of Health and the cancer dedicated organizations that were created to manage the implementation of the cancer strategy or
programme.
Dedicated versus general approaches

Jurisdictions first differ by whether cancer control services are planned, organized, and managed
according to a dedicated (disease specific) approach within the health care system or whether
cancer services are viewed more generally, as any other health care service. For example, Alberta,
British Columbia, and Ontario can be considered as having developed a strongly dedicated
approach to cancer control, namely because these jurisdictions provincial governments decided
to view cancer as a specific health problem that required particular management. Such a dedicated approach, analogous to disease management at the level of the health care system, involved
the creation of a dedicated cancer agency that would be responsible for the planning, organization, management, and delivery of cancer services throughout the province. It also involved the
creation of provincial and/or regional cancer programmes, organized around tertiary or comprehensive cancer centres, as well as other specific structures and infrastructure for the management
of cancer services. One important difference between Alberta and British Columbia on the one
hand and Ontario on the other is the recent change in the mandate of Ontarios cancer agency.
Since 2001, service delivery is no longer part of the mandate of Cancer Care Ontario, but the
agency assumes a purchaser role, by directing and overseeing substantial funding to hospitals and
other cancer care providers. In contrast, Qubec can be considered as having favoured a more
general approach, where service organization reflects the general configuration advocated for all
primary, secondary, and tertiary health care, and hence where most cancer services are delivered
in many hospitals throughout the province instead of being concentrated in a few specially designated cancer centres.
FEATURES OF STRATEGY IMPLEMENTATION
Centralization versus decentralization of authority

Jurisdictions also differ in the ways power is shared between the central command within the
Ministry of Health and the various actors involved in cancer strategy management and implementation, be it at the national/provincial, regional, and local levels. Highly centralized approaches
mean that most if not all of the governance functions (such as setting goals and indicators of
outcome, resource allocation, monitoring of strategy implementation, programme management,
service organization, system performance evaluation, etc.) are concentrated within a central
administration [57], usually the Ministry of Health or a national/provincial organization to
which the Ministry has delegated such authority. The latter organization is usually an autonomous entity with its own legal identity that remains, however, accountable to the government.
In contrast, a highly decentralized approach means that a significant part of the governing
authority is delegated to regional and local entities [58]. While not always concordant, the sharing
of governing functions usually goes hand in hand with the decentralization of responsibilities.
However, this is not always the case, since a decentralization of responsibilities is always possible
without adequate decentralization (delegation) of governing authority.
If there is no example of a strongly decentralized approach in the jurisdictions reviewed, some
elements of decentralization are more apparent in some jurisdictions than others. For example, in
England, there is a significant element of decentralization of governing powers towards the 34
cancer networks, each covering a territory comprising a population of about 1 to 2 million. Such
delegation of powers is attributed to the networks management teams and governing boards, and
relates to the planning, commissioning, organization, management, and delivery of cancer
services. Nevertheless, the Department of Health still holds very important governing authority at
the national level, namely as regards strategic planning, the financing of NHS Trusts, national
service frameworks (such as the cancer plan), and other national programmes (screening,
research, palliative care, etc.) as well as the setting of milestones and indicators of outcomes.
Moreover, the Department of Health has developed a sophisticated system of performance measurement and monitoring for the NHS that includes clinical governance activities and service
quality improvement programmes specifically designed for oncology.
In France, cancer control governance is mainly centralized under the Ministry of Health that
is responsible for the planning, financing, organization, and management of cancer control
activities. However, the Ministry shares some of its powers and responsibilities with a number of
national health agencies under its administrative supervision, namely the Institut national
du cancer (INCa), but also with the Institut national de veille sanitaire (INVS), and the Institut
national de prvention et dducation la sant (INPES). At the regional level, the Agences rgionales dhospitalisation (ARH) are responsible for translating the Ministry of Healths requirements
regarding service organization into regional schemes, in addition to being responsible for the
planning and financing of health care services. Finally, the regional cancer networks are responsible for implementing cancer plan measures related to service provision, including service coordination and quality management. While INCa, an autonomous organization, holds significant
responsibilities in all aspects of the cancer control continuum (prevention, care, and research),
the Ministry of Health has full authority on health services. Hence, cancer plan measures related
to service organization and quality cannot take place without a congruent action that involves the
Ministry of Health, INCa, and other mandated organizations. For example, the publication in
2007 by the Prime Minister of a statutory order related to authorizing cancer practice for health
care facilities was an essential pre-requisite for the implementation of the accreditation standards
that had been prepared by INCa.
In New Zealand, cancer control governance is centralized under the Ministry of Health. A cancer
team within the Ministry, led by a national clinical director for cancer control and including
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representatives from the District Health Boards, has formed a steering group that is jointly
managing a structured cancer control work programme to implement actions identified by the
New Zealand cancer control strategy action plan 200510. The cancer control work programme
also includes representatives from other key cancer control stakeholders, such as the New Zealand
cancer treatment working party and its workgroups, the Cancer Control Council, the Cancer
Society of New Zealand, as well as consumer groups. The Ministry of Health shares some of its
authority with the Cancer Control Council, an independent advisory body appointed by the
Minister of Health to monitor and review implementation of the strategy, to foster collaboration
and cooperation in cancer control (providing opportunities for non-government involvement)
and to provide independent strategic advice.
Main governing models

Based on previous detailed analyses of governing arrangements [6,9], and as exemplified by some
of the governing features described in the previous sections, the jurisdictions examined can be
classified according to three main governing models (Table 17.2):
Model 1: Authority for governance is delegated to an organization, distinct from the Department
or Ministry of Health, and dedicated to cancer control: Alberta, British Columbia, and
Ontario.
Model 2: Authority for governance is shared between the Department or Ministry of Health
and distinct national, and/or local, governmental organizations dedicated to cancer control:
England, France, and New Zealand.
Model 3: Authority for governance is distributed among branches of the Department or

Ministry of Health, including organizations dedicated to cancer control: Nova Scotia and
Qubec.
The Canadian federal level has not been included in Table 17.2 because it does not have jurisdiction over the organization, management, and delivery of health services. Yet, it favours a
dedicated approach to cancer control, with a somewhat different philosophy as regards the content of its strategy (focus on information gathering, identification of best practices, and knowledge transfer along the cancer control continuum). It also chose a unique approach for the
composition and power arrangements of its cancer governing organization. From 2002 to 2006,
the CSCC Council served as the first board of directors for the CSCC, which was established as an
independent coalition of major cancer control organizations, appointed by, and accountable to,
a forum of stakeholder groups outside the mandate of the government. This model was said
to promote collective responsibility, inclusiveness, and an evidence-based decision-making
process [53]. These arrangements evolved as a closer relationship to the government was formed
when the Council was replaced by the Canadian Partnership against Cancer (CPAC). While remaining an autonomous not-for-profit organization, the CPAC now operates at arms length from the
government, and it is accountable to the federal Minister of Health for the funds it receives.
Strengths and challenges of the main governing models

An unquestionable advantage of governing model 1 is that it confers a single organization with
the ability to plan, manage, and coordinate cancer services as well as cancer surveillance and
research for an entire jurisdiction. In addition, it confers substantial authority over the volume
and quality of a significant number of cancer services. This models main challenge is to exert
influence on, and ensure the collaboration of, health service providers that are outside the cancer
agencys centres or direct authority (e.g. cancer surgeons, primary care providers involved in
Table 17.2 Main governing models

Governing model Model 1
Model 2
Model 3
Alberta
British columbia Ontario
England
France
New zealand
Nova scotia
Approach to the
cancer problem
Strongly
dedicated
Strongly
dedicated
Strongly dedicated
Rather
dedicated than
general
Rather
dedicated than
general
Rather
dedicated than
general
Rather general General

than dedicated
Qubec
Authority
Delegated
Delegated
to a provincial to a provincial
cancer agency cancer agency
Delegated
to a provincial
cancer agency that
shares authority
as regards the
management of
service delivery
Shared
between the
Department of
Health (its cancer
dedicated entities)
and managed cancer networks
Shared
between the
Ministry of
Health, its
national health
agencies, and
a dedicated
cancer institute
Shared
between the
Ministry of
Health (its cancer
team), District
Health Boards,
and a Cancer
Control Council
Distributed
within the
Department
of Health,
including a
dedicated
cancer
programme
Distributed
within the
Ministry of
Health, including a dedicated
cancer division

MAIN GOVERNING MODELS
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prevention efforts, physicians, and other providers involved in cancer screening activities or
palliative care, etc.).
An important point to make regarding the jurisdictions that embraced a governing approach
along the lines of model 1 relates to the conditions that must be in place for successful implementation of this model. Some insights on these conditions can be drawn from the experiences of
Alberta and British Columbia (thriving cancer agencies responsible for provincial delivery of
cancer services), the less successful experience of Nova Scotia in the 1990s (replacement of a provincial cancer agency that was responsible for service delivery by a programme within the
Department of Health), and the recent experience of Ontario (removing the delivery of cancer
services function from the mandate of the provincial cancer agency, but enabling it to drive quality and accountability of service provision) [9]. Three elements can be drawn from analyzing
these experiences. First, it seems obvious that a provincial agency entrusted with such a huge
mandate (to develop a cancer control system for an entire jurisdiction) must have the necessary
powers to fully fulfil its mandate, and accordingly, must have the unequivocal support of the
Ministry of Health. Second, the establishment of a strongly dedicated and highly centralized
approach, and subsequent development of a cancer sub-system, must fit well with the overall
configuration of the jurisdictions health care system. Third, forces (leadership support, commitment, etc.) must be in place to defend and maintain such an approach in the midst of ongoing
health system reforms that touch upon the governance and organization of health services, especially if these reforms are not congruent with the model advocated in cancer control.
A strong point in favour of governing model 2 is its ability to take all existing cancer services and
initiatives at one point in time (once a nation-wide cancer strategy or plan is launched) and organize them into a coherent system (using a step-wise integration process that usually takes a couple
of years and whose pace will depend on various levers to be discussed later on in this chapter).
This is in contrast to a cancer system that would have been progressively built over many years,
on the basis of an existing core programme, as it is the case in Alberta or British Columbia.
An important point to make regarding the jurisdictions that embraced a governing approach
along the lines of model 2 is the need for clear lines of accountability, and effective coordination
among the various mandated players. This was a significant challenge in England, and may well
be in New Zealand as its four regional managed cancer control networks develop. Englands past
experience showed the need for strong collaborations between members of the cancer networks
and support from their associated NHS primary care trusts and Strategic Health Authority (SHA),
as well as clear lines of accountability between all the players to ensure effective coordination of
efforts for the implementation of the NHS cancer plan measures [59]. In spite of this challenge,
substantial progress was achieved, greatly facilitated by a successful network development programme and the performance measuring and reporting system developed by the Department of
Health [59,60].
In governing model 3 there are three main challenges as illustrated by the experiences of both
Qubec and Nova Scotia. The first challenge (mostly apparent in Qubec) relates to the dispersion
of the management and governance of cancer control activities, with some responsibilities (implementation of the cancer control strategy, clinical practice guidelines, establishment of a provincial
registry, and palliative care) being held by the dedicated ministerial division (DLCC), with others
(prevention and screening) being held by the public health branch, and still others (like the planning and management of research) not considered as a central ministerial responsibility. The second challenge (mostly apparent in Nova Scotia) relates to the disconnect between the scale of the
responsibilities attributed to a provincial departmental programme (CCNS) and the extent of
departmental support provided in terms of appropriate delegation of authority and resources to
ensure the fulfilling of all of the components of the programmes mandate. The third challenge for
MAIN GOVERNING MODELS
these dedicated organizations (DLCC or CCNS) is trying to promote a cancer control vision in a
health system configuration that is not already inclined to a disease-specific approach. This last
challenge could, however, be seen as a strong point, as a general approach is likely to enhance the
systems ability to answer cancer patients needs that are not cancer related.
Varying abilities of cancer-dedicated organizations to manage

the cancer continuum
As briefly alluded to in the previous section, existing provincial and national organizations dedicated to overseeing cancer control strategy implementation do not have the same powers when it
comes to coordinating actions within the health system to ensure best possible service delivery
along the cancer control continuum. Indeed, a comparative overview of each organizations governing functions along the cancer control continuum (Table 17.3) shows that in addition to having more suitable structures for coordinated actions, the provincial cancer agencies of Alberta,
British Columbia, and Ontario have a larger mandate for cancer control involvement and greater
room to manoeuvre.
In France, INCa plays a substantial role also but has significantly less powers in service organization and delivery than the Canadian provincial cancer agencies. In the other jurisdictions, to
achieve such coordinating power requires close collaboration between the Department or Ministry
of Health and the dedicated organization, whether inside or outside the Ministry. In England,
while the national cancer control director and its cancer action team and taskforce (which are
sitting inside the Department of Health) do not hold the strings as regards the financing, organization, and delivery of cancer control services, they, however, have the authority to oversee the
implementation of the cancer plan measures, which include several outcome indicators for cancer networks and NHS primary care trusts to meet. The development and management of efforts
to ensure an optimal patient journey is under the responsibility and authority of the cancer control networks. Each network is headed by a management team that includes representatives from
the NHS primary care trusts and the strategic health authority that serve the geographic area
covered by the network.
In Nova Scotia, CCNS is involved in all aspects of the cancer control continuum, but with
varying authority. CCNS mandate is to enhance service coordination, support best practices
through education, clinical practice guidelines and standard setting, as well as to foster research.
It is also mandated with evaluating the various cancer control programmes and initiatives being
developed. Like the other provincial cancer agencies included in this study, CCNS manages
the provincial cancer registry. It also manages the cervical cancer screening programme, while the
breast screening programme is governed by a distinct group within the acute and tertiary care
branch of the Department of Health. As regards services, CCNS main role has been to develop
programmes and to set standards, while their implementation has been undertaken by the
Department of Health and its District Health Authorities. As a result, CCNS authority has
remained largely derived from health professional training and education.
In Qubec, the cancer control division within the Ministry of Health (DLCC) is mandated to
ensuring the quality and organization of cancer care services. The influence of the DLCC on
the other dimensions of the cancer control spectrum is drawn from its ability to establish effective
collaborations with the relevant ministry divisions and other stakeholder organizations outside
the Ministry of Health. For example, the public health branch, which is not dedicated to cancer,
is responsible for general prevention activities, the organized breast cancer screening programme
and a tumour file (fichier des tumeurs). An important ongoing project led by the DLCC, but
requiring the active participation of the public health branch, is the upgrade of the tumour file in
order to develop a full-fledged provincial cancer registry.
329
330
ACB
(Alberta)
BCCA
(British Columbia)
CCO
(Ontario)
DoH cancer
taskforce and
NCAT (England)
INCA (France)
MoH cancer team

and Cancer
Control Council
(New Zealand)
CCNS
(Nova Scotia)
DLCC (Qubec)
Prevention
M, P
M, P
M, P
M, P
M, P
---
Screening
M, P
M, P
Treatment
D, F, M, P
D, F, M, P
D, M
D, M
Support and
palliative care
D, F, M, P
D, F, M, P
D, M
M,
P (patient
support)
M,
P (patient
support)
D, M
Research
D, F, M, P
D, F, M, P
D, M, P
D, M,
M, P
---
Surveillance
D, M, P
D, M, P
D, M, P
M, P
D, M, P
Model 1
Model 2
Model 3

Legend (adapted from [57]): D: Decision-making authority; F: Financing: the capacity to obtain the necessary financial resources for the functioning of the organization. In most cases,
financing is done by the government (as well as health insurance in France). Cancer dedicated organizations finance some of their activities through fundraising or revenues external to the
basic budget they receive from the Ministry of Health; M: Management: to implement Department or Ministry of Health decisions, to allocate the necessary funds to conduct planned
activities; to coordinate actors and development efforts for existing and new initiatives, to monitor progress; P: Production of health care services or research or epidemiological surveillance.
Table 17.3 Authority of national and provincial dedicated cancer organizations
LEVERAGING CHANGE TO IMPROVE CANCER SERVICES
Essential powers remaining within the Department or Ministry of Health

Notwithstanding the governing model being embraced, it should be noted that health promotion
and prevention programmes are governed by the Department or Ministry of Health, while the
cancer treatment and care component is the focus of the cancer dedicated organization. The governance of organized cancer screening programmes is less homogeneous, with some jurisdictions
having delegated the management of those programmes to their central cancer dedicated organization (Alberta, British Columbia, Ontario, and France), while others have those programmes
located within the core business of the Ministry or Department of Health (England, New Zealand,
Nova Scotia, and Qubec).
In all jurisdictions examined, Departments and Ministries of Health still keep important powers that mainly relate to sustaining and enhancing the capacity of the cancer control system to
deal with increasing demand for services. These powers are related to: financing of dedicated
organizations and other structures such as the construction of new cancer centres, capital equipment acquisition, human resources management, as well as the establishment of information
management infrastructures; and decision-making, namely for establishing organized screening
programmes and for developing prevention initiatives such as tobacco control and healthy eating
and living strategies.
Another important feature regarding the authority of the Department or Ministry of Health is
in the setting of targets and indicators of outcome. While cancer dedicated organizations may
well develop such targets or indicators, and propose them to the Ministry, it usually remains the
prerogative of the Ministry to decide when, how, and what targets will be put forth.
In this context, the transfer of authority from the Ministry of Health to dedicated cancer agencies (governing model 1) does not mean a complete delegation of powers and responsibilities.
Dedicated agencies still depend on the support given by the Ministry of Health for ensuring the
agencys adequate capacity to respond to emerging needs. Hence, even when there is a deliberate
choice to concentrate authority within a specific organization, the priority given to cancer control
by high level government officials remains a pivotal element for advancing cancer control.
Leveraging change to improve cancer services

Implementing cancer control strategies, programmes, and plans to ultimately improve cancer
control systems and ensure optimal care pathways is a Herculean task that not only requires coordinated action but, most importantly, an effective mix of leadership, strategy, and tools for enabling change on the ground. Cancer control key informants questioned about the barriers and
facilitators of implementing reform noted the importance of achieving political commitment,
securing adequate resources, ensuring strong leadership, promoting participation (clinician and
user involvement), establishing implementation strategies, and providing incentives to promote
change [6].
Levers provide the governing organizations with the necessary powers and incentives to drive
all those actors responsible for implementing the planned reforms. A previous study of available
levers within selected jurisdictions [9] revealed that jurisdictions are both developing cancerspecific levers as well as harnessing existing health system levers. Cancer-dedicated (or otherwise
relevant) levers that were examined have been mapped to the following three categories:
1 Attributes of, and powers available to, the organizations that are responsible for the implementation. In addition to the governing features of the cancer dedicated organizations described in
the previous sections of this chapter, these levers include: laws and regulations, accountability
structures, management agreements, and financial and human resources dedicated to implementing cancer control reforms.
331
332
2 Service quality assurance and improvement systems. These levers bring together tools and
mechanisms such as clinical practice guidelines, service organization guidance, quality standards, as well as processes such as peer-review visits, audits, and accreditation.
3 Mechanisms for monitoring progress and for evaluation of the cancer system, programme, or
plan. These levers relate to the various tools available (cancer registries and other clinical
databases, progress reports, patients surveys, programme assessments, etc.) to inform the
governing organization (as well as all cancer control actors and the public alike) about main
accomplishments, progress towards achieving planned actions, as well as impact of reforms
on services quality, and ultimately, on health outcomes.
By examining jurisdictions progress on service organization reforms, the study mentioned
earlier showed that, in addition to governments strong commitment, and financial support, the
most important levers for driving change included clear accountability lines, information gathering and management systems, and performance measurement systems [9]. Moreover, the study
suggested that the key to success resided in the coordinated implementation of these levers.
Table 17.4 compares the jurisdictions examined herein along a selected number of levers to illustrate some of the jurisdictions assets.
Critical factors for successful implementation of

organizational change
In sum, based on results obtained from previous comparative studies [6,9], as well as expert opinions in the field of cancer control [51,6062], we propose the following list of factors that we
believe are critical for successful implementation of organizational change:
1 Recognizing the need for change and making cancer control a top priority
2 Obtaining clear commitment from high level government officials
3 Promoting active participation of all stakeholders in the planning phase
4 Setting clear priorities for action with timeline, as well as targets and indicators of outcome
5 Securing strong leadership and creating cancer dedicated organization(s)
6 Reaching consensus (obtaining buy-in from actors) on the plans goals and means
7 Securing dedicated financial and human resources
8 Establishing performance and management agreements between key players
9 Planning for the implementation phase
10 Organizing the implementation process sharing and coordinating responsibilities
11 Providing incentives to actors on the ground
12 Developing information gathering and management systems to build capacity for progress
monitoring and evaluation
13 Developing performance measurement initiatives to improve the quality of services
delivered
14 Monitoring progress and performing assessments that entail public reporting
Conclusion
Cancer control strategies involve multiple objectives and activities seeking to improve jurisdictions cancer burden through health promotion, cancer prevention, and early detection, as well as
Table 17.4 Selected levers available for driving change towards better cancer control
Jurisdictions
Canada
Alberta
British
Columbia
Ontario
Governing
model
Dedicated cancer agencies
Priorities for
action with
timeline
CSCC.
20062010
business
plan for the
CSCC [53]
ACB. Business
plan 200506
[63]
PHSA. Service
plan 2007/
082009/10
[64] (includes
BCCA planned
activities)
Website
http://www.
partnershipagainstcancer.
ca/
cancerboard.
ab.ca/
albertahealthservices.ca/
phsa.ca/
cancercare.
on.ca/
bccancer.bc.ca
Dedicated or
relevant
legislations
and
regulations
Tobacco law Cancer

(1997)
programs Act
(2000)
Smoke-free
places Act
(2005)
Alberta Cancer
prevention
legacy Act
(2006)
Society Act
(created BCCA
in 1974)
Tobacco
control
Act (2006,
amended
2007)
England
France
New Zealand
DoH/MoH with external dedicated bodies

CCO. Ontario
cancer plan
20082012
[33] and
Ontario cancer
plan 2005
2008 [32]
Cancer Act
(1990)
Smoke-free
Ontario Act
(2006)
DoH. Cancer reform

strategy 20082012 [27]
and NHS cancer plan
(20002010) [26]
MoH.
Cancer plan
(20032007)
[21]
Nova Scotia
Qubec
Dedicated divisions in MoH

Cancer Control NS DoH.
Taskforce. NZ
Business plan
Cancer control 2008-09 [40]
strategy action
plan 2005
2010 [14]
DLCC.
Orientations
prioritaires
20072012
du PQLC
[45]
http://www.dh.gov.uk/en/ http://www.
Healthcare/
e-cancer.fr/
NationalServiceFrameworks/
Cancer/
moh.govt.nz/
cancercontrol
cancercontrolcouncil.govt.nz/
gov.ns.ca/
health/
cancercare.
ns.ca/
msss.gouv.
qc.ca/sujets/
prob_sante/
cancer/
Health Bill. Part 1:

Smoke-free premises,
places and vehicles (2006)
Health services circulars
(1999/205; 2000/021;
2001/012; 2002/005)
Smoke-free
environments
amendment
Act (2003)
NZ health and
disability Act
(section 11
created NZ
Cancer
Control Council
in 2005)
Cancer
treatment and
research
foundation
Act (1989,
repealed 1996)
Smoke-free
places
Act (2002,
amended
2006)
Tobacco law
(1998,
amended
2005, 2006)
CONCLUSION
Tobacco law
(1991, amended
2006)
Palliative care
law (1999)
Public health
law (2004)
Statutory orders
on cancer care
(2007)
Circulars on
cancer services
organization
(1998, 2005)
and palliative
care (2002)
(Continued)
333
334
Table 17.4 (Continued) Selected levers available for driving change towards better cancer control*
Canada
Alberta
Governing
model
Dedicated cancer agencies
Accountability
links and
management
agreements
CPAC board
is accountable to the
federal
minister of
health
ACB board is
accountable to
the minister of
health
Multi-year performance
agreements
between MoH
and ACB and
MoH and
regional
authorities
ACB annual
reports
British
Columbia
Ontario
England
France
New Zealand
DoH/MoH with external dedicated bodies

BCCA
President is
accountable to
PHSA CEO and
PHSA board
PHSA board is
accountable to
the minister of
health services
Performance
agreements
between MoH
and PHSA;
MoH and
regional
authorities;
and regional
authorities
and hospitals
PHSA annual
reports include
BCCAs
activities
CCO board is
accountable
to the minister of health
and long-term
care
Memorandum
of understanding
between MoH
and CCO
Accountability
agreements
between MoH
and local
authorities
and local
authorities
and hospitals
Accountability
agreements
between CCO
and hospitals
Clinical
accountability
framework
between CCO
and service
providers
CCO annual
progress
reports
NCD is accountable to the

Department of Health
board
The DoH board is accountable to secretary of state
for health
Cancer taskforce and cancer action team accountable to NCD
Strategic health authorities
(SHAs) accountable to NHS
chief executive, who is
accountable to secretary of
state for health
Primary care trusts (PCTs)
accountable to SHAs for
performance and to NHS
for financing
Cancer services networks
accountable to PCTs and to
their governing board, that
is accountable to SHA
DNC produces progress
reports
INCa, and
ARH(s) are
under administrative supervision (soustutelle) by
the MoH
INCa produces
progress reports
Nova Scotia
Qubec
Dedicated divisions in MoH

Cancer Control
Council is
accountable to
the minister of
health
NCD is accountable to directorgeneral of
health
Ministry cancer
control team
accountable to
NCD
DHB boards
responsible to
the minister of
health
Operation policy framework
by MoH for
DHBs and
DHBs performance measured
by MoH
Regional cancer
networks
accountable to
their governance group and
produce
progress reports
to DHBs
CCNS board
chair is
accountable to
minister of
health
CCNS reports
to the deputy
minister of
health (since
resignation of
commissioner,
CCNS COO
reports to a
director of the
acute and tertiary care
branch)
District health
boards are
part of the
DoH and must
produce regular reports
CCNS produces
reports to the
community
DLCC director is
accountable
to the minister of health
through the
director of
the
DGSSMU
branch
Performance
and management
agreements
between
MoH and
regional
agencies
and regional
agencies
and local
authorities
DLCC produces
annual
report to
MoH
Jurisdictions
Independent Not found

evaluation of
entire national
or provincial
system,
strategy,
plan or
programme
Not found
Not found
Arms length National Audit Office

approach
[6567]
with Cancer
System
Quality Index
(since 2005)
Cour des
Cancer Control External evalu- Not found
comptes [68]
Council of NZ ation teams
Haut conseil de [70]
[37,71]
sant publique
[69]
CONCLUSION
335
336
the cancer patients journey through the best possible provision of health services along the care
continuum.
All jurisdictions recognize the need to improve their cancer burden through a comprehensive
cancer control approach, though they differ in the means that they make available to bring out
the planned reforms. One important difference lies in the more or less extensive use of cancerdedicated structures and infrastructures to tackle this complex health problem. While all jurisdictions have some form of structures dedicated to cancer, such as interdisciplinary cancer teams,
jurisdictions show various degree of a dedicated approach. Alberta, British Columbia, and Ontario
can be viewed as having built the most extreme versions of that approach, a cancer system
within the more general health care system.
Three main governing models could be identified when examining the relationship between
the Department or the Ministry of Health and dedicated cancer organizations as regards the
degree of authority sharing. Moreover, the varying abilities demonstrated by these cancer governing organizations to manage the various activities comprising the cancer control spectrum are
generally mapped to the three main governing models identified. However, irrespective of governing models, functional governing arrangements should ensure that cancer dedicated organizations have sufficient authority and adequate means to carry out their mandate.
The most important lesson is that a clear commitment from the highest government authority
needs to be obtained. In addition to this crucial element, significant progress in implementing
organizational change is likely to be obtained when all actors responsible: (1) have the appropriate means to properly plan the implementation, (2) have or develop together a functional governing organization, (3) have available the most important levers to sustain change and coordinate
actions, and (4) are provided with the means to assess progress and publicly report on that
progress. Hence, not only is it important to sketch out where to go and how, it is equally important to be able to know what was accomplished, what remains to be done, and what is the impact
of the efforts and resources that have been committed. This is the single most difficult challenge
awaiting Departments or Ministries of Health and their cancer dedicated organizations.
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71 Smith ER, McCutcheon D, & Schmidt B (2001). Evaluation of Cancer Care Nova Scotia. CCNS,
Halifax, NS.
339
340
Acronyms
ACB
ACCCC
BC
BCCA
CCNS
CCO
CCS
CPAC
CQCO
CSCC
DGSSMU
DoH
DHA
DHB
DLCC
INCa
MoH
MHLTC
MHS
MSSS
NCAT
NCD
NGO
NHS
NS
NZ
PCT
PHSA
PQLC
SHA
UNESCO
Alberta Cancer Board

Alberta Coordinating Council for Cancer Control
British Columbia
British Columbia Cancer Agency
Cancer Care Nova Scotia
Cancer Care Ontario
Canadian Cancer Society
Canadian Partnership Against Cancer
Cancer Quality Council of Ontario
Canadian strategy for cancer control
Direction gnrale des services de sant et mdecine universitaire, MSSS (Qubec)
Department of Health (England, Nova Scotia)
District Health Authority (Nova Scotia)
District Health Board (New Zealand)
Direction de la lutte contre le cancer (Qubec)
Institut national du cancer (France)
Ministry of Health
Ministry of Health and Long Term Care (Ontario)
Ministry of Health Services (British Columbia)
Ministre de la Sant et des Services sociaux (Qubec)
National Cancer Action Team (England)
National Cancer Director (England, New Zealand)
Non-governmental organization
National Health and Social Services (England)
Nova Scotia
New Zealand
Primary Care Trust (England)
Provincial Health Services Authority (British Columbia)
Programme qubcois de lutte contre le cancer
Strategic Health Authority (England)
United Nations Educational Scientific and Cultural Organization
Chapter 18
Evaluating the outcomes of

cancer control
Andrea Micheli, Paolo Baili, Roberta Ciampichini,
Arduino Verdecchia1
In the developed world, cancer is the second cause of death (about 26 per cent of all deaths for
2001) after heart diseases, while it is the third cause of death in the developing world (10 per cent
of all deaths), preceded by diarrhoeal diseases [1,2]. There are a number of reasons why cancer
has become a major public health issue in developed countries. With few exceptions over the
world, the incidence of cancer has been increasing since the 1950s when the first cancer statistics
became available, partly because the prevalence of cancer risk factors was already increasing and
partly because the life expectancy at birth has increased and cancer is mainly a disease of older age [3].
The life expectancy at birth of countries undergoing rapid economic development (China, India,
Brazil, etc.) is now increasing rapidly, and these countries are expected to experience a cancer
epidemic in the near future, as has already happened in the developed world. It has been
estimated that over six million people died from cancer worldwide in 2002; this figure will be
50 per cent higher in 2020 [4].
Awareness of the importance of cancer control plans has consequently increased since the
end of the last century. A cancer control plan can include policies for cancer prevention, and for
diagnosis and treatment, to improve survival and quality of life for cancer patients. The choice of
appropriate policies depends on availability of resources, health systems, social and cultural conditions, political systems, evaluation of past policies, new scientific knowledge, international
experience, etc. Each of these factors can influence cancer control. Thus effective cancer control
is a continuous process in which a fundamental role is played by the evaluation of the outcomes
and the identification of priorities.
This is possible only when cancer information systems work on population-based data. The
main sources are the population-based cancer registries through which we are aware of the cancer
incidence increase. They also inform us that in developed countries, the survival of cancer patients
has increased markedly in recent years and mortality is decreasing [5,6]. Cancer prevalence (the
proportion of subjects living in the population at a given date with past diagnosis of cancer) is
therefore increasing. Using these cancer indicators, the present chapter synthesizes the
epidemiological situation that cancer control planners have to face both in defining new plans
and in evaluating past ones. The chapter covers the main characteristics and indicators necessary
Andrea Micheli, PhD, Paolo Baili, PhD, Roberta Ciampichini, PhD, Descriptive Studies and Health
Planning Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy; Arduino Verdecchia, PhD,
National Centre of Epidemiology, Health Surveillance and Promotion, Istituto Superiore di Sanit, Rome,
Italy.
342
EVALUATING THE OUTCOMES OF CANCER CONTROL
to implement a well-functioning cancer information system, and the up to date situation for
the main cancer outcome indicators in various world geographical areas, and discusses them in
relation to the implementation of the cancer control process.
Cancer information systems: the role of population-based

cancer registries
Cancer control plans should stick to reality. The main purpose of the cancer information system
is to bridge the gap between cancer research and cancer control activities. The prerequisites for
achieving this goal are:
Availability of population-based data
Completeness of data collection in all the countries or region
Standardization of data-collection methods to allow comparisons (comparisons make data

intelligible)
Ability to adapt information systems to changing circumstances
These characteristics are largely achieved by the population-based cancer registries (CRs)
established in the majority of developed countries. CRs collect data on all new cases of cancer
occurring in a well-defined population. Data refer to the entire population covered, and are frequently sent from different units (e.g. pathology departments, medical records, radiotherapy
databases, cancer centres, hospices, private hospitals, screening registries, other CRs, primary
care facilities, nursing homes, and death certificates) within a single institution or several
institutions [7].
Population-level patient data are becoming more and more useful for several purposes:
Measuring the burden and the public health impact of cancer nowadays the minimal role of
any cancer registry is the provision of timely and robust data on cancer mortality, incidence,
survival (following up incident cases for a given time after diagnosis) and prevalence
Evaluating the impact of environmental and social factors on cancer risk and outcomes, and
supporting investigations into the causes of cancer for instance, thanks to cancer registration
we know that mesothelioma is caused by exposure to asbestos; lymphoma and oral cancer
rates are higher in ethnic minorities; cancer survival for patients living in poor areas is lower
than for those living in rich areas
Evaluating the quality of cancer care by providing comparative data about treatment patterns
and outcomes, access to treatment between social groups, etc. to perform these studies
additional data to the minimum, such as details on treatment, quality of life, hospitalization,
or cost per case need to be collected usually in ad hoc studies on representative samples of
registered cases
Contributing to the evaluation of screening programmes a number of cancer registries

already contribute to the efficient evaluation of screening programmes
Cancer registries use well-established quality criteria to measure cancer incidence. The
International Agency on Research on Cancer (IARC) regularly publishes the book Cancer
Incidence in Five Continents [8] which includes observed cancer incidence data from all world
CRs satisfying specific data quality criteria (e.g. internal consistency; histological verification of
cancer diagnosis; percentage of cases registered by Death Certificate Only, with unspecified sites,
or with age unknown) [8]. Table 18.1 shows the percentage of population covered by CRs included
in Cancer Incidence in Five Continents Volume IX; coverage is higher in developed areas with
a maximum of 80 per cent in North America.
CANCER INFORMATION SYSTEMS: THE ROLE OF POPULATION-BASED CANCER REGISTRIES
Table 18.1 Percentage of population covered by cancer registries by geographical region [8]
Percentage of coverage
Africa
Asia
South and Central America
Europe
33
Oceania
73
North America
80
Cancer information system in detail: cancer outcome indicators

The long tradition of population-based cancer registries in the majority of developed countries
allows the use of standardized methodologies and facilitates international projects and networks
for the collection of four main outcome indicators, shown in Table 18.2.
Incidence (Table 18.2 A): the main epidemiological measurement of cancer occurrence. This
indicator describes the frequency with which new cases of cancer occur in a population.
Cancer incidence is the main indicator to define the priorities for cancer control by primary
prevention and, for some cancer sites, by early diagnosis.
Mortality (Table 18.2 B): it is the final indicator of the cancer impact in the population. Cancer
mortality gives information on the social burden of the disease, and it is useful to measure the
ultimate impact at population level of effective curative approaches, and to define surveillance
policies and also priorities in early diagnosis.
Relative survival (Table 18.2. C): together with the number of new cases (incidence) and
deaths (mortality), information on the survival of all patients after a cancer diagnosis is a
key indicator of cancer control. It measures the outcome of curative approaches (mainly
surgery, chemotherapy, radiotherapy, and in the future diet therapy and genetic therapy), at
population level. Relative survival will also depend on the efficiency of diagnosis and the stage
distribution of cancer.
Prevalence (Table 18.2 D): by estimating the total number of the present population who
experience cancer, calculates the total cancer burden in the population and is a useful indicator
for planning and allocation of resources.
These four indicators give a descriptive vision of cancer epidemiology in various populations. In developed countries, discussions in recent years have aimed to define other cancer
outcome indicators able to show aspects of the quality of cancer care and treatment. For instance,
in Europe, the European Commission subsidized the EUROCHIP project to define a list
of cancer health indicators to be collected in all European Union Member States [9,10].
Table 18.3 shows the list of the indicators proposed by EUROCHIP-1 lying within various
cancer domains prevention, epidemiology and cancer registration, screening, cancer treatment
and clinical aspects, macro-social, and economic variables. The sources of information may be
cancer registries, health surveys, cancer screening programmes, and other international
databases.
For the indicators on the performance of cancer care and treatment, EUROCHIP underlined
firstly that these indicators must be at population level to be useful for cancer control. Consequently,
the sources of these indicators can be population-based cancer registries collecting information
343
344
Table 18.2 Key parameters to describe the burden of cancer

A. Cancer incidence rate
Generic definition
Number of new cases diagnosed in a time interval/Person years at risk in the interval
Rationale
Main epidemiological measurement of cancer occurrence
Utility
Basic measure of cancer burden and cancer occurrence
Caveat
Dependent on accuracy of diagnosis and documentation. Affected by screening

activities and quality of cancer registration
Main source of
information
Population-based cancer registries (CRs), which collect information of all cancer cases
diagnosed in the population covered by them
International
projects
International Agency on Research of Cancer (IARC) reports periodically centralized

data for Cancer Incidence in 5 Continents [8]. The last volume IX covered cancers
diagnosed in 19982002. GLOBOCAN [11,12,13] gives estimates of cancer incidence
in 1998, 2000, & 2002
B. Cancer mortality rate

Generic definition
Number of cancer deaths in a period / Person-years at risk during the same period
Rationale
Main epidemiological measurement of cancer deaths
Utility
Basic measure of cancer burden and outcome
Caveat
Dependent on accuracy of the assigned cause of mortality and completeness of

documentation
Main source of
information
National statistical offices
international
projects
WHO make available mortality data for all major causes of death. IARC has produced
a web-based databank (http://www-dep.iarc.fr) from which cancer mortality rates
are downloadable by population, cancer site, age, calendar year, etc.
C. Cancer relative survival rate

Generic definition
Ratio of the observed survival rate from time of diagnosis in the group of cancer
patients to the expected survival rate in a demographically comparable subset of the
general population
Rationale
Reflects the survival experience of cancer patients, after removing the effects of noncancer causes of death. It is recommended for geographical and temporal
comparisons of survival
Utility
Basic epidemiological and clinically relevant measure of cancer burden
Caveat
Dependent on quality and timing of diagnosis and completeness of follow up and

data linkage; may be not directly understandable by patients
Main source of
information
Population-based cancer registries linked to vital statistical systems
International
projects
EUROCARE [5,14], CONCORD [15]
D. Cancer prevalence proportion

Generic definition
Total prevalence is the proportion of subjects living in the population at a given date
with past diagnosis of cancer. Prevalence can be also decomposed by disease
duration (i.e. 1-, 2-, 5-, and 10-year prevalence)
Rationale
Indicates how many people show potential medical, physical, psychological, or social
problems as a consequence of their cancer
Utility
Epidemiological measure for cancer burden description
Caveat
Total prevalence includes also cancer cured patients; dependent on completeness of

data linkage
Main source of
information
Population-based cancer registries linked to vital statistical systems
international
projects
GLOBOCAN [9,12,13] gave the estimates of 5-year prevalence
E. Stage at diagnosis: percentage of cases with early diagnosis

Generic definition
Proportion of cases classified as localized with the condensed-TNM staging system.

(Cancer is stated using the TNM classification. The Condensed-TNM grouped
various stages in Localized or Advanced stage)
Rationale
Indicator of early diagnosis
Utility
Determinant of treatment and prognosis; indicator of health education and/or

diagnosis processes
Caveat
The expected value of this percentage is cancer site-dependent, but comparisons

among countries are still informative
Main source of
information
Population-based cancer registries linked to hospital data (or clinical data). However,
the majority of CRs are not routinely linked with these data. In this case, data can be
collected by ad hoc studies
F. Delay of cancer treatment

Generic definition
Time between date of diagnosis (or date of first clinical contact) and date of first
treatment
Rationale
Treatment delay could be related to: (a) individual condition of the patient;
(b) biological condition of the patient; (c) health system deficiencies
Utility
Measure of health care processes in patient assessment and in service provision
Caveat
Comparison between countries has to be done carefully as the validity of this

information may vary in the different health systems in various countries
Main source of
information
Population-based cancer registries linked to hospital data (or clinical data). However,
the majority of CRs are not routinely linked with these data. In this case, they can be
collected by ad hoc studies
G. Organized screening coverage

Generic definition
Proportion of the national population that is covered by an organized screening

programme in a given period by site (i.e. has the opportunity to participate in an
organized programme)
Rationale
Organized screening is recognized as more effective than spontaneous

opportunistic screening
Utility
Measure of service provision related to cancer burden and outcomes
Caveat
Organized screening coverage is a very approximate measure of screening

participation
Main source of
information
Population-based organized cancer screening registries
346
Table 18.3. List of indicators proposed by EUROCHIP-1 by domain [9,10]

Epidemiology & cancer
registration
2.1. Population covered by highquality cancer registries

1.1. Consumption of fruit and
2.2. Cancer-incidence rates,
vegetables
trends and projections
1.2. Consumption of alcohol
2.3. Cancer relative survival1.3. Body mass index (BMI)
rates, trends and
distribution in the
projections
population
2.4. Cancer prevalence
1.4. Physical activity attitude
proportions, trends and
1.5. Tobacco survey: prevalence
projections
of
2.5. Cancer mortality rates,
a. tobacco smokers
trends, projections and
among adults
person-years of life lost due
b. tobacco smokers
to cancer
among 10-14 year olds
2.6. Stage at diagnosis % of
c. ex-smokers
cases with:
Environment & occupational risk
a. early diagnosis
b. metastases
d. exposure to
environmental tobacco
smoke (ETS)
1.6. Exposure to sun radiation
1.7. PM10 emissions
1.8. Indoor exposure to radon
1.9. Prevalence of occupational
exposure to carcinogens
1.10. Exposure to asbestos:
mesothelioma incidence
and mortality trends
Lifestyle
Medicaments
1.11. Prevalence of use of
hormone replacement
therapy drugs
Screening
Treatment & clinical aspects
Macro-social and economic

variables
Screening examinations
Health system delay
Social indicators
3.1. % of women that have

undergone mammography
(breast cancer)
3.2. % of women that have
undergone cervical cytology
examination (cervical
cancer)
3.3. % of persons that have
undergone a CRC screening
test
4.1. Delay of cancer treatment
5.1.
5.2.
National evaluation of organized mass-screening process

indicators
3.4a. Organized screening
coverage
3.4b. Screening recall rate
3.4c. Screening detection rate
3.4d. Screening localized
cancers
3.4e. Screening positive
predictive value
3.4f. Screening benign/
malignant biopsy ratio
3.4g. Screening interval cancers
3.4h. Screening specificity
Resources
4.2. % of radiation systems in
the population
4.3. %of diagnostic CT scanners
in the population
4.4. % of positron emission
tomographies (PETs) in
population (for future)
4.5. % of magnetic resonances
in population (for future)
Treatment
4.6. Compliance with best
oncology practice
Palliative care
4.7. Use of morphine in cancer
patients
4.8. % of patients receiving
palliative radiotherapy
Educational level attained

Gini index
Macro-economic indicators
5.3.
5.4.
5.5.
GDP
Total social expenditure
Total national expenditure
on health
5.6. Total public expenditure
on health
5.7. Anti-tobacco regulations
5.8a. Public expenditure for
cancer prevention on antitobacco activity
5.8b. Total expenditure for
population-based cancer
registries
5.8c. Total expenditure for
organized cancer-screening
programmes
5.8d. Public expenditure for
cancer drugs
5.8e. Total expenditure for
cancer research
5.8f. Estimated cost for one
cancer patient
Demographic indicators
5.9.
Age distribution in 2010,

2020, & 2030
5.10. Life-table indicators
Prevention
on the patients cancer histories and collecting data on organized screening programmes.
The main indicators suggested by EUROCHIP were, as shown in Table 18.2:
Stage at diagnosis (Table 18.2 E): percentage of cases with early diagnosis. This indicator is a
proxy for diagnostic awareness and the effectiveness of diagnostic services.
Delay in cancer treatment (Table 18.2 F): average time between the date of cancer diagnosis
and the date of first treatment.
Organized screening coverage (Table 18.2 G): proportion of population resident in areas where
population-based organized screening is implemented, divided by the national population in
the comparable age/sex group.
Collection of these indicators or similar ones has been performed in some regions, while in
others discussions are still ongoing at country or continental levels in Europe, for example,
specific pilot studies were organized to study the feasibility of collecting these indicators [10]. It is
desirable that intercontinental comparisons will be possible in the future allowing incidence,
survival, and prevalence be compared all over the world, as we will show in the next paragraphs.
Cancer incidence and primary prevention

Historically cancer is a disease of richer countries. In fact, Figure 18.1 shows that cancer incidence
risk increases when gross domestic product (GDP) increases both for men and women. Applying
these cancer incidence risks to the populations in 2007, the American Cancer Society estimated
there were 12.3 million new cancer cases all over the world in 2007 subdivided as: 0.8 million in
Africa, 5.6 million in Asia, 1.0 million in Central and South America, 3.0 million in Europe, 0.1
million in Oceania, and 1.8 million in North America [2]. The ageing of population foreseen in
countries like China, Brazil, and India will dramatically increase the number of cancer cases in
next decades.
Incidence specific by cancer site can be used to evaluate cancer control activities aimed
to reduce the number of cancer cases (i.e. primary prevention and screening programmes to
diagnose pre-cancerous disease). In this evaluation we have to consider that the cancer incidence
Men
Women
Africa
126.8
Asia
156.0
Central &
South America
North America
398.4
100
200
122.9
300
179.7
209.2
Oceania
298.5
Asia
Europe
287.6
Oceania
122.7
Central &
South America
196.6
Europe
Africa
400
253.0
North America
305.1
0
100
200
300
400
Fig. 18.1 Age-standardized incidence rates per 100,000 (world standard) by world regions 2002.
Geographical areas are ordered by increasing gross domestic product (US $ per capita purchasing
power parity) in 2006; Africa 2493$, Asia 4978$, South and Central America 9495$, Europe
23212$, Oceania 25423$, Northern America 43377$. (International Monetary Fund data).
Source: GLOBOCAN [13].
347
348
indicator can be influenced by both the past prevalence of various risk factors and by new and
improved diagnostic tests, as for the years after their full implementation they bring occurrence
forward by detecting early invasive cancers (specifically for those cancer sites for which diagnostic
tests successfully detect early diagnosis cancers and not only pre-cancerous diseases).
According to GLOBOCAN [13] the cancer sites with the highest incidence rates across the
world are lung, prostate, stomach, and colorectal cancers for males, and breast, cervix uteri, colorectal, lung, and stomach cancers for females. Figure 18.2 shows the contribution of these main
cancer sites to overall cancer incidence in six world geographical areas. The analysis of these data
in connection with information on risk factor prevalence and the diffusion of early diagnosis tests
gives a picture of cancer control evaluation and priorities.
Historically tobacco smoking was one of the first risk factors defined in oncology, for lung
cancer [16]. So, a first set of cancer control actions refers to tobacco control strategies (cigarette
price increases, restrictions on advertising, smoking bans, etc). Ecological analysis in the United
States demonstrates that state tobacco control efforts reduce state-wide lung cancer incidence
rates in younger adults [17]. Current patterns of lung cancer incidence closely follow smoking
Men
Africa
Asia
Central & South
America
Lung
Colorectal
Stomach
Europe
Prostate
Other sites
Oceania
Northern
America
0%
20%
40%
40%
40%
100%
Women
Africa
Asia
Lung
Central & South

America
Colorectal
Stomach
Europe
Breast
Cervix
Other sites
Oceania
Northern
America
0%
20%
40%
40%
40%
100%
Fig. 18.2 Distribution of all cancer: numbers of cases by cancer site in 2002. Geographical areas
are ordered by increasing gross domestic product.
Source: GLOBOCAN.
prevalence trends, directly linked with tobacco prevention activities [18]: a reduction (or increase)
of smoking prevalence means a reduction (or increase) of lung cancer incidence after 20 to 30
years. So current lung cancer incidence rates measure the effects of policies performed 20 to 30
years ago, while current smoking prevalence gives us information on future cancer outcomes.
Figure 18.2 shows that the influence of lung cancer on total cancer incidence for 2002 is highest
in the developed world but almost as high in Asia. The prevalence of tobacco use is increasing in
the developing countries, and tobacco control must be one of the main primary prevention
cancer control strategies in the majority of countries. The WHO Tobacco Atlas shows that while
consumption is levelling off and even decreasing in some countries, worldwide more people
are smoking; by 2030 there will be at least two billion smoking people in the world. Even if prevalence rates fall, the absolute number of smokers will increase; the expected continuing decrease in
male smoking prevalence in developed countries will be offset by the increase in female smoking
rates [19]. According to the WHO Global Youth Tobacco Survey (GYTS) at the beginning of the
twenty-first century, tobacco use among young people is unfortunately already well established
in many parts of the world. Nearly 20 per cent of 13 to 15 year olds use some type of tobacco
product, and among those who smoke cigarettes, nearly 25 per cent smoked their first cigarette
before the age of 10 years [20].
Stomach and colorectal cancers have different impacts on overall incidence in various world
areas. In Asia and Central and South America stomach cancer is more common than colorectal
cancer, while in Europe, Oceania, and North America the contrary applies. Stomach cancer
remains a primary prevention cancer control priority in Asia and Central and South America
although incidence rates are universally decreasing [21], principally thanks to changes in
food preservation and storage (refrigeration and consequently decreasing use of salt- and smokebased food preservation methods), and to decreasing Helicobacter Pylori infection due to
improved sanitation [18]. Major prevention strategies to reduce stomach cancer incidence include
improved sanitation, higher intake of fresh fruits and vegetables, food preservation methods that
are not salt- or smoke-based, avoidance of tobacco products, and maintenance of a normal body
weight [18].
Colorectal cancer, on the contrary, is becoming a cancer control priority in Europe, Oceania,
and North America. The World Cancer Research Fund (WCRF) [22] recently performed a metaanalysis on relationships between dietary habits and physical activity and various cancer sites;
they concluded that physical activity protects against colorectal cancer (the main evidence is
for colon rather than for rectal cancer) and that red meat, processed meat, body fatness, and
abdominal fatness are causes of colorectal cancer. So, major colorectal cancer control strategies
for primary prevention include the promotion of a healthy diet and physical activity aimed to
contain the obesity and overweight epidemic that the developed world is experiencing [23].
Prostate cancer is becoming the most common cancer diagnosed in men in the Americas,
Oceania, and Europe. During the last decades, prostate cancer incidence rates have shown an
artefactual increase in all parts of the world thanks to an early diagnosis test (prostate-specific
antigen [PSA] testing), mainly diffused outside organized screening programmes. This led to a
rapid increase in the recorded incidence of early diagnosed cases. Diet has been implicated in the
aetiology of prostate cancer, but convincing aetiologic evidence is lacking [22]. For this reason no
specific primary prevention strategies are yet recommended.
Breast cancer is the most common cancer diagnosed in women in the world. It is hormone
related, and the factors that modify the risk of this cancer when diagnosed pre-menopausally and
when diagnosed (much more commonly) post-menopausally, have different roles. Risk factors
for breast cancer in women include the events of reproductive life, and lifestyle factors (diet,
alcohol, etc.) that modify endogenous levels of sex hormones [24]. Physical activity probably
349
350
protects against breast cancer in post-menopause, and there is limited evidence suggesting that it
also protects against this cancer diagnosed in pre-menopause. The evidence that alcoholic drinks
are a cause of breast cancer at all ages is convincing. The evidence that the factors that lead to
greater adult attained height, or its consequences, are a cause of post-menopausal breast cancer is
convincing, and these are probably also a cause of breast cancer diagnosed pre-menopausally [22].
Differences existing in cervical cancer incidence across the world are one of the major examples
of the unrealized potential of cancer control. Cervical cancer is probably the unique type of cancer
which could be totally overcome because we know its cause (human papilloma virus [HPV]
infection is a sine qua non condition of cervical cancer) and we know the method to diagnose the
disease in a pre-cancerous stage (through the Pap smear test) [25]. But, as Figure 18.2 shows,
cervical cancer is still one of the major cancer types diagnosed in developing populations. Low
incidence rates in the developed world have been attributed to the extensive organized screening
programmes based on the Pap smear test. This is one of the major results coming from the evaluation of cancer outcomes: at the international level we know that cervical cancer organized
screening programs are effective and should be considered everywhere.
Cancer survival and cancer care

Information necessary for planning cancer control includes population-based survival (proportion of incident cases alive at a given time after diagnosis). Population-based survival is usually
lower than survival calculated from hospital series or clinical trials because it includes all patients,
including those who do not have access to adequate treatment or who are not eligible for trials. In
Europe, population-based age-standardized, and cancer site-standardized, relative survival for all
cancers has been shown to be a proxy indicator for monitoring countries performance in cancer
control [26]; by regression analysis of macro-economic variables in 19 countries it emerged as
closely related to a countrys wealth and also its overall investment in health.
Cancer survival is known to vary somewhat between the regions of the United States covered by
the Surveillance, Epidemiology and End Results (SEER) Program [6] but the international range
of survival showed by EUROCARE in Europe is much wider [5,14]. Comparisons of cancer survival between Europe and the United States since 2000 have identified wide differences, with
survival usually higher in the United States [27]. Recently, the CONCORD study provided systematic comparisons of cancer relative survival between Europe, North America, Australia, and
Japan for cancer patients diagnosed between 1990 and 1994 and followed up to 31st December
1999, for four cancers of substantial cancer control importance: breast cancer in women, and
cancers of the colon, rectum, and prostate [15]. Five-year relative survival for these cancer sites
was generally highest in the United States and lowest in Eastern Europe (Figure 18.3). If population-based survival in one country is substantially lower than that in other countries, especially
those of similar wealth, the health system is probably not functioning as it should [14]. Various
evaluating studies can be performed to find the reasons for this problem and to suggest remedies.
One of the basic strategies to evaluate whether the higher survival rates observed in some populations are due to better therapy or to earlier diagnosis has been to collect standardized information
on disease stage at diagnosis. If survival differences disappear once they are stratified or adjusted
for stage at diagnosis (and for relevant variations in the use of staging techniques and tests), they
can be assumed to be mainly due to earlier diagnosis. On the other hand, differences in stagespecific survival comparisons strongly suggest an important effect of treatment. Understanding
the role of these two components in determining survival differences between populations over
time is important for evaluating and planning cancer control strategies [28]. These types of studies are called by EUROCARE high resolution survival studies because they require specific
Colorectal cancer - male
100%
USA
Relative survival
80%
Canada
Japan
60%
Australia
Europe North
40%
Europe South-West
Europe UK+Ireland
20%
Europe East
0%
0
2
3
4
Years after diagnosis
Colorectal cancer - female

100%
USA
Relative survival
80%
Canada
Japan
60%
Australia
Europe North
40%
Europe South-West
20%
Europe UK+Ireland
Europe East
0%
0
Fig. 18.3 Age-standardized relative survival up to 5 years after diagnosis by cancer site and area.
Standardization with Corraziaris method [37]
Notes: Data are derived from cancer registries in each country, as follows:
Australia. Cancer registries of Australian Capital Territory, New South Wales, Northern Territory,
Queensland, South Australia, Tasmania, Victoria, Western Australia
Canada. Cancer registries of British Columbia, Manitoba, Nova Scotia, Ontario, Saskatchewan
Europe South-West. Cancer registries of Austria: Tyrol; France: Bas-Rhin, Calvados, Cote-dOr, Isre;
Germany: Saarland; Italy: Ferrara, Genoa, Latina, Macerata, Modena, Parma, Ragusa, Romagna,
Sassari, Turin, Tuscany, Varese, Veneto; Malta; Netherlands: Amsterdam, Northern Netherlands,
Southern Netherlands; Portugal: Southern Portugal; Spain: Basque Country, Granada, Mallorca,
Murcia, Navarra, Tarragona; Switzerland: Basel, Geneva, Graubunden-Glarus, St. Gall-Appenzell,
Valais
Europe East. Cancer registries of Czech Republic: West Bohemia; Estonia; Poland: Cracow, Warsaw;
Slovakia; Slovenia
Europe North. Cancer registries of Denmark; Finland; Iceland; Norway; Sweden
Europe UK+Ireland. Cancer registries of Ireland; England; Northern Ireland, Scotland, Wales
Japan. Cancer registries of Fukui, Osaka, Yamagata
USA. Cancer registries of Atlanta (Georgia), California, Colorado, Connecticut, Florida, Hawaii,
Idaho, Iowa, Louisiana, Michigan, Nebraska, New Jersey, New Mexico, New York, Rhode Island,
Seattle (Washington), Utah, Wyoming
Source: CONCORD [15].
351
Prostate cancer - male

100%
USA
Relative survival
80%
Canada
Japan
60%
Australia
Europe North
40%
Europe South-West
Europe UK+Ireland
20%
Europe East
0%
2
3
4
Breast cancer - female

100%
USA
80%
Relative survival
352
Canada
Japan
60%
Australia
Europe North
40%
Europe South-West
20%
Europe UK+Ireland
Europe East
0%
2
3
4
Fig. 18.3 (Continued)
information from patients histories from diagnosis to treatment. They can be performed by
population-based cancer registries with further ad-hoc data collection on samples of patients.
High resolution studies performed on European and US cancer patient databases showed the
explanatory effect of clinical variables such as stage at diagnosis, investigative approach, anatomic
site and morphology on colorectal cancer [29,30] and breast cancer survival differences between
United States and Europe [31].
The evaluation of these studies should consider the following possible biases [28]:
Stage migration phenomenon: The evolution of diagnostic technology has increased the
sensitivity of detecting loco-regional extension of tumours and silent distant metastases.
Stage-specific survival, therefore, may increase just because a fraction of tumours that previously would have been labelled as localized can now be recognized as advanced, thus increasing the survival of both the localized set (because they are more localized) and the advanced
stage set (because they also include the less advanced cases that in the absence of modern
staging procedures would have been diagnosed as localized). The availability of information
on relevant staging procedures may allow the control of the stage migration phenomenon in
statistical analysis.
Lead-time bias: Diagnosis at an earlier stage can increase survival (which is measured from
date of diagnosis) by simply anticipating the date of diagnosis without postponing the date
of death. In this case, longer survival associated to a more favourable stage distribution is not
an advantage for the assessed population. This bias can be studied through the analysis of the
trends by means of models that provide estimates of the proportions of patients who are cured
(defined as those with the same survival as the general population of the same age) and of
the life expectancy for fatal cases (those patients who die from the disease). Lead-time bias
can just result in a longer survival time of fatal cases without an increase in the cured patient
proportion [32].
Possible inclusion in the patient population of a number of pseudo-cancers, that is, of

incidentally found cancers that would never have progressed to give clinical signs. A certain
proportion of cancers detected during screening fall into this category. If the frequency of
these pseudo-cancers is variable between populations, or is increasing over time, the consequent difference in survival will be entirely reflected in the proportion of cured. Cure survival
models are therefore not able to detect this bias, unless they are applied to stage-specific subgroups of patients. It is reasonable to assume that pseudo-cancers will all belong to the lowest
stage category. Differences in the proportion of cured in stage-specific subgroups other than
the lowest stage group can therefore be interpreted as genuine survival gain.
In conclusion, the application of cure models to high resolution studies can theoretically
provide a complete conceptual framework for a meaningful evaluation of survival differences.
However, the interpretation of survival trends should always take into account the contemporary
trends in incidence and mortality rates, as well as in care practices.
Other evaluation studies correlate cancer survival with macro-economic variables. Figure 18.4
shows the relationship in Europe between age- and cancer site-standardized relative survival
(ASRS) for all cancers at five years after diagnosis, for patients diagnosed in 1990 to 1994 and
followed up to 31st December 1999, and an index of technological financial investment in cancer
care (CTS/TNEH: the ratio between investment in computer tomography scanners and total
national expenditure on health). European countries in Figure 18.4 are ordered by TNEH. The
figure shows a clearer relation of ASRS to TNEH for the less rich countries in the lower portions
of the graphs compared to rich countries. ASRS was lower than expected in Denmark, England,
Wales, and Poland, that is countries with lower investment in technology for cancer (low CTS/
TNEH), compared to other countries with comparable total health expenditure. Moreover, high
ASRS for Austria, Sweden, Italy, and Finland can be explained in terms of high CTS/TNEH,
corresponding to greater investment in technology for cancer than in other countries with similar
total health expenditure. This ecological study in Europe showed that improving cancer care
principally requires greater wealth: the most direct way for poorer European countries to close
the 15 percentage point survival gap [33] between them and the richest countries would be to get
richer [26]!
Other international ecological studies have examined cancer survival in comparison to socioeconomic indicators. In the United States, cancer registry-derived relative survival for individual
cancer sites was used in models with socio-economic indicators to estimate survival in areas not
covered by cancer registration. This study showed that breast, prostate, and, to a lesser degree,
colorectal cancer survival were strongly associated with demographic and socioeconomic indicators (including percentage unemployed, median family income, percentage with high school
diploma, etc.) at the county level [34]. The ELDCARE project (Europe) studied between country
differences in cancer survival in the elderly, taking account of socioeconomic conditions and the
characteristics, finding that cancer survival for various cancer sites in the elderly was strongly
related with GDP, total national expenditure on health (TNEH) and distribution of computed
tomography scanners in population (CTS) [35,36].
353
354
5-year ASRS - women
CTS/TNEH
Switzerland
Germany
France
Norway
Austria
Denmark
Netherlands
Sweden
Italy
Finland
England
Spain
Wales
Scotland
Slovenia
Czech Rep
Slovakia
Poland
Estonia
Switzerland
Germany
France
Norway
Austria
Denmark
Netherlands
Sweden
Italy
Finland
England
Spain
Wales
Scotland
Slovenia
Czech Rep
Slovakia
Poland
Estonia
Switzerland
Germany
France
Norway
Austria
Denmark
Netherlands
Sweden
Italy
Finland
England
Spain
Wales
Scotland
Slovenia
Czech Rep
Slovakia
Poland
Estonia
0
20
40
60
5-year ASRS - men
25
50
75
100
125
20
40
60
Fig. 18.4 Population-based age-standardized and cancer site-standardized relative survival for all cancers (ASRS) at 5 years after diagnosis and CTS/TNEH
indicator (see notes) for 19 European countries ranked by 1995 Total National Expenditure on health (TNEH).
Notes: ASRS: age-standardized and cancer site-standardized relative survival for all cancers. Patients diagnosed in 19901994 and followed up to 31st
December 1999. Source: EUROCARE-3 [26,33]
CTS: computer tomography scanners per person in 1995. Sources: Organization for Economic Co-operation and Development (OECD), ELDCARE [35]
TNEH: total national expenditure on health expressed in US dollars ($) per capita adjusted for purchasing power parity (PPP) in 1995. Sources: Organization
for Economic Co-operation and Development (OECD), ELDCARE [35]
CTS/TNEH: ratio between CTS and TNEH by 1010
Cancer mortality
Mortality is the final indicator of cancers impact in the population. Figure 18.5 shows that cancer
mortality risk increases when gross domestic product (GDP) increases, with the exception
of Europe for men, and Africa for women that had in 2002 a higher mortality rate than other
geographical areas with similar GDP. Applying these risks to the populations, the American
Cancer Society estimated 7.6 million cancer deaths all over the world in 2007 subdivided as: 0.6
million in Africa, 3.9 million in Asia, 0.5 million in Central and South America, 1.8 million in
Europe, 0.06 million in Oceania, and 0.7 million in North America [2].
Men
104.8
Africa
115.9
Asia
Central &
South America
122.5
180.7
Europe
138.1
Oceania
North America
153
0
50
100
150
200
Women
94.3
Africa
77.4
Asia
Central & South
America
98.6
Europe
103.1
Oceania
103.6
North America
112.1
0
50
100
150
200
Fig. 18.5 Age-standardized mortality rates per 100,000 (world standard) 2002. Geographical areas
are ordered by increasing GDP.
355
356
Cancer mortality gives information on the social burden of the disease. In the evaluation of
cancer mortality trends it is important to underline that they depend on (a) previous incidence
trends and (b) survival trends. So the analysis of cancer mortality rates to evaluate past cancer
control activities needs awareness as, for example, a reduction of mortality could depend on a
primary prevention activity that reduced the risk factor prevalence in the population, or on a new
treatment that increased survival, or on both.
Cancer mortality is one of the outcome indicators used to evaluate the efficacy of organized
screening programmes. It is usually used in clinical trials performed to study the usefulness of
specific diagnostic tests in screening programmes [38], but population-based cancer mortality
can also be used in ecological studies to test the efficacy of organized screening programmes in the
population after their implementation.
For breast cancer, the effectiveness of mammography screening has been evaluated in screening
trials showing consistent mortality reductions of 20 to 35 per cent amongst women in the age
range 50 to 69 years [38]. Moreover, several ecological studies have evaluated the service screening programmes showing statistically significant reductions in breast cancer mortality following
the introduction of mammography screening [39,40,41]. For colorectal cancer a recent metaanalysis of the clinical trials estimated the pooled reduction in mortality to be 15 per cent for
biennial screening, with a 25 per cent effect amongst screening attenders [42]. The objective of
cervical cancer screening is to reduce both cervical cancer incidence and mortality. The value of
the Pap smear in reducing the risk of invasive cancer and mortality has been firmly established,
and it is estimated that regular screening reduces the risk of cancer by 80 per cent [43].
For other cancer sites, mortality reductions emerged from some clinical trials of specific screening
tests for oral cancer [44] and for liver cancer (among hepatitis B virus-infected populations) [45],
while no international consensus is yet achieved on screening tests for lung cancer (among smokers), or for prostate cancer using PSA tests. Several ecological studies and time series analyses have
been published correlating the frequency of PSA testing (or the incidence of prostate cancer, as a
surrogate for PSA testing) with prostate cancer mortality; the results have been inconsistent [38].
Cancer prevalence
Cancer prevalence, the measure of live persons with a past cancer diagnosis, calculates the total
cancer burden in a population and is a useful indicator for planning and allocation of resources.
It grows with incidence and with the percentage of patients surviving. Table 18.4 shows the huge
Table 18.4. Five-year all cancer prevalent cases in 2002 by geographical area
M
M+F
Africa
443,813
566,341
1,010,154
Asia
4,239,349
4,859,232
9,098,581
Central & South America
694,205
991,823
1,686,028
Europe
3,364,950
3,916,640
7,281,590
Oceania
157,448
155,119
312,567
Northern America
2,647,700
2,533,495
5,181,195
World
11,547,465
13,022,650
24,570,115
number of 5-year all cancer prevalent cases by geographical area in the world for 2002 according
to the GLOBOCAN estimates [13]. These data represent the number of living subjects in 2002
who were diagnosed with cancer during the prior 5 years (i.e. they are a subset of the total prevalent cases). In Europe the ratio of 5-year prevalence to total prevalence is estimated as around
40 per cent [46,47]. Under the hypothesis that this percentage is applicable in other developed
areas, we can estimate nearly 18 million prevalent cases in 2002 for Europe, 0.8 million in Oceania,
and 13 million in North America.
Cancer prevalence is expected to dramatically increase in the developed world thanks to the
increase of the number of new cases (because of population growth, the increase of life expectancy
and because people are still exposed to cancer risk factors) and the increase in survival rate.
Cancer prevalence figures include various groups of cancer survivors with very different rehabilitation needs (e.g. clinical, psychological, psychiatric, nutritional, and social needs). Identifying
these groups and meeting their needs is becoming a cancer control priority, but evaluation studies
on the rehabilitation needs of prevalent cancer cases are still rare at the population level.
Time from diagnosis is a major criterion for categorizing people with cancer, since care
and surveillance requirements vary with time. In the first few months after diagnosis, care generally consists of primary and adjuvant treatment. Subsequently, patients require follow-up
to monitor recurrences or for the recognition and treatment of side-effects. A subset of cases
will require treatment for recurrences, or palliation for persistent symptoms such as pain;
thus, presence or absence of recurrence is another useful criterion for subdividing the prevalent
population according to the intensity of care required. For the purposes of planning health
resource allocation, it is useful to be able to estimate the prevalence of cancer patients who continue to need treatment, and those who will require follow-up and possible treatment for their
cancer, and to exclude those who will survive for a long time after diagnosis and can be considered
cured.
Following this approach, using a population-based cancer registry sample of colorectal cancer
patients, a recent study classified prevalent cases as: (1) cases that will be cured (cured prevalence), that is patients with the same life expectancy as individuals in the general population of the
same age; (2) cases with disease progression, that is with metastases at diagnosis, or whose disease
recurred shortly after primary treatment (morbid prevalence); (3) cases with recurrence, that is
who are clinically free of cancer after primary treatment, but later develop recurrence (premorbid prevalence) [48]. To estimate the health demand over time of cancer patients other
studies used prevalence by stage at diagnosis [49,50] under the hypothesis that different stages
have different needs and treatments. Another study in the United States introduced a different
definition of prevalence: care prevalence that is the numbers of patients under care [51]. Care
prevalence was estimated by phases of care defined as initial diagnosis (treated with curative
intent), post-diagnostic monitoring, treatment for recurrent/metastatic disease or second primaries, and terminal care. In this case care prevalence includes also part of the cured patient fraction,
those who still have some types of care. The findings indicated that for colorectal cancer several
years after diagnosis (also after 5 years post-diagnosis, the time that most colorectal cancer survivors are considered cured) many patients were still receiving care for their cancer or its sequelae.
All these studies were performed for a specific cancer site (colorectal cancer) and using ad-hoc
collection of clinical follow-up data of cancer registry patient samples.
One direction for future prevalence studies would be to use increasingly available information such as prescription data, hospital and outpatient admissions, and pharmaceutical company databases to provide more refined breakdowns of the care needs of patients with cancer
diagnoses.
357
358
Conclusions
Probably in a few years cancer will be the leading cause of death in developed countries and tens
of millions of people will live with a past diagnosis. With increasing cancer prevalence, the demand
for resources to follow-up cancer patients and identify and treat cancer recurrences increases.
While this is happening, new knowledge is being acquired by genetic research which is tending to
change the understanding of cancer from a limited number of major killer diseases to a long list
of distinct rare diseases, each requiring a different treatment [52].
We have considered the major objectives of cancer control in the developed world in terms of
short, medium, and long term objectives [52].
Short-term objectives
Cancer patient needs: achieve full knowledge of the variation in demand for health services
as a function of cancer type, patient age, and rehabilitation requirements, to address with
adequate investments the problem of increasing prevalent cancer cases (e.g. increased needs of
the elderly in richer countries).
Early diagnosis: implement organized screening programmes and invest in modern diagnostic
and treatment technologies to eliminate inequalities in access to diagnosis and treatment
facilities in those developed countries with worst survival rate.
Medium and long term objectives
Reduce incidence: address primary prevention as a main priority, sustaining collaboration

between national health authorities, private sectors, research organizations, and stakeholders
to put into effect policies that can achieve a substantial reduction in cancer incidence over the
next 10 to 20 years.
Diffusion of best practice: support the spread of best practice and use pressure to raise consistently poor standards. Give the best possible treatment and care to cancer patients, exchanging
information on best practices for diagnosis, treatment, rehabilitation, and palliative care.
Long-term objectives
Guidelines for cancer research: research on the molecular bases of cancer offers new therapeutic
possibilities everyday and has transformed cancer from being one disease into many rare diseases,
requiring each a different treatment. Cancer control should also address the escalation of cancer
costs, which even rich countries may soon be unable to meet.
Thus cancer control short, medium, and long term objectives should be defined in collaboration between health authorities, research organizations, stakeholders, and patients.
Acknowledgments
We are grateful for the support from EUROCHIP-3 (European Cancer Health Indicator Project),
funded by the Health and Consumer Protection Directorate-General of the European Commission
(contract No. 2007 121) and from the CONCORD project.
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361
Chapter 19
Priority setting methods and

cancer control
Stuart Peacock, Lindsay Hedden, Craig Mitton1
Priority setting involves policy-makers, managers, and clinicians making decisions about competing claims for alternative amounts and types of health care on their limited budgets [1,2].
Choices have to be made about what health services to fund and what not to fund, and the extent
to which services will or will not be funded. No additional influx of resources will alleviate the
fundamental need to make such choices. The reason is straightforward: the needs and demands
of the community will always exceed the resources available.
As a result, many countries have introduced legislation requiring that health service agencies
employ effective priority setting methods to best meet the health needs of their community.
However, evidence has shown that decision-makers often lack appropriate guidance on priority
setting methods, training in the technical skills required, and the resources to seek out appropriate evidence [3,4,5,6]. The challenge for both the wider health sector and for cancer control is
global: how do we develop robust, evidence-based, scientific methods for priority setting, whilst
building managerial capacity in those methods through better guidance and training?
The purpose of this chapter is to introduce some fundamental principles of priority setting,
critique the main priority setting approaches in the health sector, and describe some case studies
which illustrate how alternative approaches have been employed. The chapter is laid out as follows. First, we provide a brief description of the burden and cost of cancer. We then introduce
two fundamental principles of priority setting. Third, we critique the main approaches to priority
setting and present a readily adaptable way forward for this type of planning activity. We conclude with a discussion of the need to balance economics and ethics when addressing the challenge of setting priorities in cancer control.
The burden and cost of cancer

In 2005, cancer accounted for 7.6 million or 12.5 per cent of all deaths worldwide [7]. More than
70 per cent of these deaths occurred in low- and middle-income countries, where access to
prevention, screening, diagnosis, and treatment programmes may be limited. World Health
Organization projections suggest that cancer deaths will increase 45 per cent between 2007
and 2030 (to 11.4 million deaths) and that incidence will rise from 11.3 to 15.5 million cases
per year [7]. The steady increase in incidence is caused by an aging population, changes to
1
Stuart J. Peacock, DPhil, Co-Director, (Canadian) National Centre for Health Economics, Services, Policy
and Ethics in Cancer; Senior Scientist, British Columbia Cancer Agency; Associate Professor, University of
British Columbia, Vancouver, British Columbia, Canada; Lindsay Hedden, MSc, Research Scientist,
National Centre for Health Economics, Services, Policy and Ethics in Cancer; Research Scientist, British
Columbia Cancer Agency, Vancouver, British Columbia, Canada; Craig Mitton, PhD , Associate Professor,
University of British Columbia, Canada.
364
PRIORITY SETTING METHODS AND CANCER CONTROL
genetic susceptibility, and lifestyle factors (increased smoking prevalence among females, lower
rates of reproduction, etc.) [8]. Cancer is also a source of substantial morbidity worldwide,
accounting for nearly 10 million Disability Adjusted Life Years (DALYs) lost in Europe and more
than 5.7 million lost in North America, representing 16.7 per cent and 12.5 per cent of total
DALYs lost respectively in 2002 [8].
The direct costs of cancer care accounted for between 4.1 and 9.3 per cent of total health care
spending in OECD countries in 2006 [9]. This corresponds to a spending of approximately
57 billion or 125 per capita (approximately $77 billion or $169 US dollars, respectively, with
a 1 = $1.35 exchange rate, May 19, 2009). Despite substantial increases in the costs of cancer
pharmaceuticals, inpatient care continues to dominate the cost of cancer care, accounting for
approximately 70 per cent of the total cost (see Table 19.2) [9]. Spending on cancer care is also
increasing with improved survival: patients are using more courses of chemotherapy and radiotherapy, and survivors of the disease frequently suffer long-term disability that requires conti
nued therapy or monitoring [10].
Against this backdrop, cancer control faces many challenges: the rising costs of innovation and
technology (equipment, drugs, and diagnostics); allocating resources across the spectrum of
interventions; a lack of incremental funding despite growth in incidence and prevalence; growth
in all cancer control programmes and the need for new programmes with no defined funding;
and rising community expectations and demand. Short of unprecedented treatment breakthroughs, cancer control and care is incapable of significantly reducing the burden of cancer.
In 2005, this led Canadian Strategy for Council Control to conclude that a systematic approach
to organising the limited resources in cancer control and care is urgently needed to respond to
these challenges [11].
Economic principles of priority setting

Two fundamental economic concepts are central to priority setting: opportunity cost and marginal analysis. The principle of opportunity cost arises from the economic problem: resources for
health services are scarce, and are insufficient to provide all health services that may provide benefits to society. Decision-makers managers and clinicians therefore have to address a series of
questions: how, when, where, and what health services should be provided, and for whom? This
involves deciding which services to provide, and which not to provide, recognizing either implicitly or explicitly that providing one service may result in an alternative service not being provided
due to resource scarcity. The benefit forgone from not providing the alternative service is the
opportunity cost. This has an important implication for priority setting. If the aim of health
services is to maximize the well-being of the community (e.g. through programmes that seek to
improve patient outcomes and population health) then decision-makers must consider the costs
and benefits of different health services.
The second fundamental concept is that of the margin, which refers to the next unit of benefit
gained (or lost) or the next unit of resources invested (or disinvested). Thinking and acting at the
margin typically involves shifting resources from areas of low health gain per dollar spent to areas
of higher health gain per dollar spent in order to improve benefit to the population as a whole.
This can be illustrated with a simple example. If a cancer hospital was given $100,000 of
additional money and had to decide how best to allocate it, this money should be allocated to
programmes which resulted in the greatest possible improvement in health gain for patients.
Similarly, if a $100,000 budget cut was imposed on the hospital, the resources should be taken
from places in which the detrimental impact on health gain would be minimal. Now, it then follows that if the overall budget is to stay the same, and the question is asked as to whether the
ECONOMIC PRINCIPLES OF PRIORITY SETTING
Table 19.1 Direct costs for cancer care in selected countries in 2004
Direct costs
for cancer
( million)
Direct costs for

cancer per
capita ()
Cancer costs
as % of total
health care costs
Total health care Population

expenditure
(2004)
Austria
1247
153
6.6
18,897
8,175,000
Belgium
1543
148
6.6
23,375
10,399,000
Czech Republic
514
50
5.0
10,287
10,211,000
Denmark
760
141
6.6
11,516
5,401,000
Finland
571
109
6.6
8648
5,228,000
France
7458
124
5.3
140,714
60,200,000
12,108
147
6.6
183,455
82,491,000
1168
106
6.6
17,698
11,060,000
Hungary
495
49
5.0
9897
10,107,000
Ireland
513
127
6.6
7769
4,044,000
Italy
6725
117
6.6
101,888
57,553,000
Netherlands
1502
92
4.1
36,643
16,275,000
890
194
6.6
13,478
4,592,000
1138
30
5.0
22,758
38,180,000
930
89
6.6
14,098
10,509,000
Spain
4367
102
6.6
66,169
42,692,000
Sweden
1316
146
7.0
18,802
8,994,000
Switzerland
1471
199
6.6
22,294
7,391,000
UK
5634
94
5.0
112,719
59,778,000
Europe
55,664
125
6.4
841,105
453,280,000
United States
62,321
212
4.7
1,325,988
293,655,000
5013
157
6.7
74818
31,946,000
19,750
155
9.3
212,370
127,687,000
2199
109
5.2
42,298
20,111,000
New Zealand
413
102
6.6
6261
4,061,000
South Africa
ND
ND
ND
12,586
42,769,000
Germany
Greece
Norway
Poland
Portugal
Canada
Japan
Australia
Notes: 1. Cost data based on purchasing power parity (PPP); ND = no data;

2. Reproduced with permission from [8]
3. 1 = $1.35US exchange rate, May 19, 2009
current pattern of resources is correct, one might think about shifting resources from one area
(i.e. the area which is producing the least health gain per dollar spent) to another (i.e. where the
most health gain per dollar is expected to result). In economic terminology, the process of reallocating resources should continue until the ratios of marginal benefit to marginal cost across all
programmes are equal. At this point, health gains are maximized.
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366
Table 19.2 Breakdown of direct cancer health care costs (percentage of total direct costs)
Inpatient care
Ambulatory care
Drugs
Germany (2002)
67% + 9% other
16%
8%
Sweden (2002)
73% (hospital)
15% (including home care)
10%
France (1998)
83%
7% + 6% transport costs
4%
Netherlands (1994)
60% + 11% non-hospital

institutional care
18%
11%
Canada (1998)
75%
17% (physician care + direct costs)
9%
United States (1990)
65%
31%
4%
Australia (1993/1994)
71% (including
nursinghomes)
26%
3%
Spain (1998, 1 region)
77%
7%
16%
Note: Reproduced with permission from [8]
Approaches to priority setting

The health policy literature contains numerous examples of different approaches to priority setting. These include historical allocation, needs assessment, core services, economic evaluation,
and quality adjusted life year (QALY) league tables. In what follows, we provide a critique of each
of these approaches illustrated with case studies, before discussing a potential way forward for
priority setting in cancer control.
Historical allocation
To date, the most commonly used approach to priority setting, in cancer control and other areas
of health services, has been historical allocation. Simply put, this means basing funding decisions
on historical expenditure patterns, typically with crude adjustments for new growth monies
(in years of budget surpluses) or budget cuts (in years of deficits) and/or for demographics.
However, historical allocation methods provide no systematic mechanism for maximizing health
gain from a given budget, because the approach fails to recognize the fundamental principle of
opportunity cost [1,12]. Additionally, historical allocation fails to consider the costs and outcomes
of alternative health services and the budget constraints faced by decision-makers [13]. Evidence
has also shown that health service decision-makers are often dissatisfied with this approach to
priority setting [4]. Since historical expenditure patterns are unlikely to maximize benefit to the
population, many authors have suggested that a more systematic and explicit approach to priority
setting is needed if this (and other) health sector goals are to be successfully pursued.
Needs assessment
Broadly speaking, needs assessment asks whether a need exists and whether programmes and
services are in place to address that need [14]. A needs assessment exercise typically consists of a
systematic appraisal and characterization of an unmet need, the characteristics (and in some cases
preferences) of the population in need, and the nature and scope of existing services directed
towards this target group [14,15]. Typically, attempts are made to define need at either the individual or population level, and then set a minimum standard of care (or set of services) to meet
that need [16].
APPROACHES TO PRIORITY SETTING
In practice, this is often a very difficult task because the definition of need itself is value based
and is thus dependent on who is trying to define it, which can result in a multitude of definitions
taken from different perspectives [1,16]. More importantly, attempting to set a minimum standard ignores the reality that there may not be enough resources available (i.e. the opportunity cost
is too great) to meet the minimum standard, nor does it explicitly address the target populations
capacity to benefit from the proposed intervention [1]. This then suggests that some sort of additional priority setting activity is still required [16].
A related approach that is sometimes used in lobbying for more resources for a particular condition is that of cost-of-illness studies. In such studies the overall cost of a particular disease is
presented and compared to the overall cost of other conditions. In making such a comparison it
is implied that if one condition imposes a greater economic burden on society than its comparators, more resources should be spent on that condition. However, shifting resources based on
such quantifications will not necessarily lead to an improvement in benefit to the population
overall, nor will efficiency necessarily be improved [17]. In essence, without explicit consideration of opportunity costs, and changes to services at the margin, maximizing benefit for the
population as a whole may occur only by chance.
Core services
The core services approach involves developing guidelines to attempt to define a set of medically
necessary core services to be funded and provided under a given health plan (most often a publicly funded health system) [1]. This involves making clear distinctions between those programmes and services that are medically necessary and those that are not.
This approach has been the subject of much debate in the literature. New Zealand and the
Netherlands have provided notable examples of attempts to put the core services approach into
practice. They did so by developing guidelines for the inclusion of various programmes and services based on explicit criteria, such as: effectiveness, efficiency, necessity, fair use of public money,
and involvement of public values (see Application 19.1) [1820].
In practice, however, both of these countries have had difficulty rationing services in this
manner. A major problem has been in deciding which treatments are necessary, and which treatments individual patients and families should be responsible for [21]. Similar to the problems of
defining need, the concept of medically necessary is difficult to characterize and operationalize [1].
More importantly, the core services approach lacks the flexibility to shift resources at the
margin: even though some patients may benefit from services that are not included in the core,
funds cannot be reallocated to such services once they are deemed not to be medically necessary [1].
For example, a particular service may not be included within the core services offered, yet
for some potential consumers it may provide more benefit per dollar spent than for some
consumers of services that are considered to be core. However, as those services that are not
included are out, a shifting of resources from those services that are in to those that are out is
unlikely to be possible. Without the flexibility to shift resources at the margin, improvement in
benefit to the population overall will be unlikely. Overall, the core services approach has had a
limited effect on policy making internationally, perhaps in part because of the lack of attention
to the margin [1].
Economic evaluation
There are several economic approaches to priority setting that warrant discussion. The most common economic approach is that of economic evaluation, which is defined as the comparative
analysis of alternative courses of action in terms of both their costs and consequences [23].
Economic evaluations provide technical comparisons of two or more interventions or services on
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368
Application 19.1 Core services: health care rationing policy in

New Zealand
New Zealand adopted a core services approach to health care financing in 1991. The Core
Services Committee (CSC) was tasked with defining a set of core services: a restricted set of
services that purchasers would be responsible for, or a full service complement that a
restricted population might access. The predominant view was that the Committee should
seek to retain universal entitlement and access, seen to be a tradition in New Zealand. Thus,
the Committee elected to define a set of core services that the full population would be able to
access, based upon four criteria: effectiveness; value for money; fairness; and consistency with
public values.
Those services falling outside of this core basket would fall to the responsibility of private
citizens. However, defining the gamut of services that fell within the boundaries of the core
proved to be an impossible task, largely due to the political climate [19]. Unequivocal political
support would have been necessary in order to implement any definition of core services, but
no politician at the time was willing to deny the voting public access to health care. Even if a
final definition of core services had been agreed upon Gauld argues that few health professionals and administrators would have denied services to unfunded patients [19].
As a result, the CSC abandoned the core services approach and shifted to providing two
types of clinical guidelines, one that provided a synthesized source of research evidence to
health professionals, and the other that focused on when care can be withheld. Adherence
to these guidelines remains a matter of professional preference, an approach which is now
common to many countries. Thus the plan for defining a core set of services, at least at the
national level, failed. It was also recognized that guidelines do not necessarily promote
efficiency or equity, and that a pragmatic, economic approach to priority setting would still be
required at the local, regional, or national levels [22].
the basis of costs and benefits, most often using cost-effectiveness, cost-utility, or cost-benefit
analysis methods. This type of economic approach suggests that priority setting is a relatively
straightforward optimization problem: decision-makers should seek to maximize health-related
benefits for their population subject to the constraint of scarce resources. As a result, much of the
health economics literature has focussed on developing technical methods for the appraisal of the
costs and benefits of health services. Economic evaluation approaches have often been applied at
the national level, such as guidance issued from the one-off health technology appraisals of the
National Institute of Health and Clinical Excellence (United Kingdom) (see Application 19.2),
the Pharmaceutical Benefits Scheme (Australia), and the Canadian Agency for Drugs and
Technologies in Health.
The primary strengths of using economic evaluation methods are that both costs and benefits
are being considered, and that two or more interventions are directly compared against each
other providing incremental results. However, a major limitation of this approach is the time and
cost involved in each study, meaning that such evaluations are not feasible for all relevant questions [24]. A single economic evaluation will rarely take account of all the options a decisionmaker is faced with when setting priorities [25] and economic evaluation often fails to properly
consider the budget constraints faced by local decision-makers [26]. This has been, at least in
part, due to the failure of these approaches to adequately capture the complex and multifaceted
APPROACHES TO PRIORITY SETTING
Application 19.2 Economic evaluation: National Institute of

Health and Clinical Excellence (NICE) in England and Wales
The guidelines programme of NICE, arguably the largest of its type in the world, publishes
guidelines based on clinical- and cost-effectiveness of interventions in the areas of public
health, health technology, and clinical practice. Guidelines are developed by a Guideline
Development Group (GDG), which includes health professionals, content experts, and members of the general public, following the stages outlined as under [28]:
Recruit and train GDG Chair and Clinical Advisor.
Prepare the scope Identify key clinical issues and undertake a scoping literature review.
Define the parameters of the guideline after consultation with relevant stakeholder
groups.
Select GDG members GDGs consist of health professionals and other individuals familiar
with patient and carer issues.
Formulate review questions Identify and formulate review questions based on scoping
results, and identified patient experiences.
Identify and review evidence Using systematic methods, search relevant databases
and consider stakeholder submissions of evidence. Assess quality of selected studies
for clinical- and cost-effectiveness. Evidence requirements include quantification of clinical effectiveness, impact on quality of life, and estimation of the technologys resource
impact in terms of physical and monetary units. Should an independent economic evaluation not exist, the GCG will produce one, assessing cost-effectiveness using an NHS
perspective.
Develop guidelines GCGs interpret evidence, identify key issues for implementation, and
formulate research recommendations, all of which form the basis of clinical or costeffectiveness guidelines.
Prepare implementation support GCGs develop tools for costing and other issues to support implementation of new guidelines.
Revise guidelines
comments.
Prepare and publish guidelines.
Guidelines are revised in light of consultations and stakeholder
NICEs guideline development process is iterative and ongoing; guidelines are revised on a
case-by-case basis, typically when new evidence as to effectiveness or cost-effectiveness
becomes available [28].
Since its inception, NICE has published more than 33 appraisals for drugs that treat
cancer. [30]. The highest cost per QALY accepted as cost-effective imatinib for treating
chronic myeloid leukemia was estimated to be US$77,760. In total, 26 condition-treatment
pairs have been deemed to be cost-effective, with 3 condition-treatment pairs deemed to be
cost-ineffective (fludarabine as a single agent for chronic lymphocytic leukaemia; and
bevacizumab and cetuximab both for metastatic colorectal cancer. Very few technologies
with ICERs mentioned earlier US$48,600 (or 30,000) per QALY are accepted by NICE,
although, there is currently no empirical basis for the implementation of a threshold of costeffectiveness in health care.
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nature of both objectives and constraints in health service decision-making [2]. As such, results
from individual economic evaluations most likely still need to fit into a broader priority setting
framework.
A common output of economic evaluation studies is the incremental cost-effectiveness ratio
(ICER). The ICER quantifies the incremental cost required to obtain a given unit of benefit.
Study authors often state that a given treatment is cost-effective because of the favourable cost
per unit of benefit derivation expressed through a particular ICER [e.g. 27]. In stating results in
this manner explicit consideration is not being given to opportunity costs. That is, as the ICER by
definition relates to additional costs to produce the stated health gain, the question of where those
additional resources will come from necessarily arises. Of course, the additional resources must
come from elsewhere in the health care budget, usually at the expense of some other treatment or
service, thereby resulting in an opportunity cost. Only further examination, comparing the given
treatment option with other options, can provide information as to whether the stated treatment
is cost-effective. Again, the question of the margin arises, as it is through shifting of resources,
from one option to another, that maximization of benefit is achieved, not necessarily through
funding an option with a low ICER.
Cost-per-QALY league tables

In an effort to move away from the type of one-off technology appraisals described herein,
cost-per-QALY league tables has been used to compare the costs and outcomes of multiple technologies. Interventions are ranked against each other based on cost-per-QALY ratios and those
with lower ratios are ranked better than those with higher ratios [23]. The most notable example
of this type of approach was the Oregon experiment of the 1990s, in which the Health Services
Commission in Oregon State attempted to apply a league table approach to limit spending.
A description of their approach is presented in Application 19.3.
Cost- per-QALY league tables are also problematic from an economic perspective. Most importantly, each entry in the league table uses a different baseline comparator. Because cost-per-QALY
figures are incremental, an interventions position on the league table depends on the presence,
absence, or choice of a pre-existing intervention as a comparator, and the cost and benefit of said
intervention [23,29]. A given intervention may appear higher in the league table ranking because
of its apparent efficiency relative to a given comparator, but whether resources should be invested
in that way can only be determined through explicit consideration of opportunity cost relative to
a much wider range of alternative uses of those resources. An additional limitation is the inability
to account for the quality or strength of research evidence within the context of the league
table [1]. Finally, the margin is again ignored in this approach, as per the core services and
economic evaluation discussions in the preceding paragraphs [1].
Programme budgeting and marginal analysis

The above discussion has criticized so-called non-economic and economic approaches alike,
based on their lack of adherence to the fundamental principles of priority setting. It should also
be mentioned that the way forward is not about simply advocating that more resources be allocated to the health system, because scarcity will always exist, independently of how much is in the
total pot. As such, a framework is required which adheres to the principles outlined earlier but is
pragmatic enough to deal with the complexities of health care decision-making in a timely and
evidence-based manner. One approach which does adhere to the economic principles and has
been used extensively in health care over the past 25 years is Programme Budgeting and Marginal
PROGRAMME BUDGETING AND MARGINAL ANALYSIS
Analysis (PBMA). To date, over 100 PBMA studies have been reported in countries such as
Australia, Canada, New Zealand, and the United Kingdom.
PBMA is an economic framework specifically designed to aid local, regional, or national decision-makers in setting priorities. The intent of PBMA is to provide assistance to decision-makers
in directing resources to maximize benefits from health services. In doing so, PBMA makes
explicit uses of the principles of opportunity cost and marginal analysis. Most importantly, the
focus of PBMA is helping decision-makers who are budget-holders; those individuals who are
responsible for the real-world implementation of resource allocation decisions. It is these
decision-makers whether they are based in government ministries, health authorities, health
maintenance organizations, primary care trusts, or hospitals that have to bear the opportunity
cost of resource allocation decisions elsewhere in their budgets.
Application 19.3 Cost-per-QALY league tables: Oregon State

In 1987 the Oregon State Legislature sought to develop a method for allocating resources that
was both efficient and accountable. Their strategy was to move away from rationing by excluding people from coverage. Instead, when budget limits were required, specified health services
would be eliminated from coverage based on an explicit set of priorities and a systematic
evaluation methodology (DiPrete and Coffman 2007). Based on this strategy, a Health Services
Commission was created, and was charged with developing a prioritized list of health services
that would determine the minimum acceptable benefit for Oregonians.
A cost-per-QALY league table approach was chosen. With help from clinical experts, the
Commission gauged the relative effectiveness of condition/treatment (CT) pairs and then
ranked them in a league table according to relative effectiveness. However, the approach was
largely unsuccessful because league table rankings frequently conflicted with the judgment of
both physician and non-physician members of the Commission. The problem was that very
effective but very expensive treatments for less severe conditions (such as malocclusion due to
thumb sucking) ranked better than moderately effective, moderately expensive treatments for
very severe conditions. The Commission concluded that while such a league table approach
may effectively gauge the cost of treating a particular condition, it cannot address the relative
importance of treating that condition in the first place.
As a result, the Commission abandoned the league table approach and instead classified
investments based on seventeen categories of treatment. Within these ranked categories, services were prioritized based on cost and effectiveness. Before decisions were finalized,
Commission members moved CT pairs manually, ensuring that the final ranking was an accurate reflection of their best personal judgment.
In an evaluation of this method, DiPrete and Coffman (2007) conclude that the prioritized list
has successfully guided resources allocations on the basis of clinical evidence and judgment in a
manner that is explicit and accountable. However, they admit that the list has not successfully
shifted responses to budgetary constraints to explicit reductions in benefits. They claim that the
United States Federal Government has been reluctant to reduce benefits, forcing the state to
make adjustments in eligibility and in payment levels to keep within budget. This political constraint has prevented the full exploration of the effectiveness of the prioritization of services in
meeting budget limits while maintaining commitment to cover all those in need and the commitment to pay providers at levels sufficient to cover the cost of care (DiPrete and Coffman 2007).
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In its simplest form PBMA addresses three questions:

1 For budget increases: how should the extra dollars be allocated between health services to
maximize benefits?
2 For budget reductions: how should service reductions be made to minimize the impact on
benefits?
3 For a given budget: how do we allocate dollars between services so that benefits are
maximized?
A PBMA study can be broken down into the seven stages shown in Table 19.3, which are
designed to provide a systematic and explicit framework for priority setting [1,2,31]. PBMA asks
decision-makers to construct a programme budget (a map of how resources are currently spent)
and then assists them in making recommendations for changing existing allocations of resources
to services using marginal analysis. This type of priority setting activity can take place both within
health programmes at the micro level or across programmes at the macro level.
The advisory panel plays a central role in any PBMA study, and is typically made up of 8 to 30
stakeholders from relevant clinical and non-clinical disciplines [1]. Relevant stakeholders may
include those directly involved in the programmes being considered (e.g. clinicians, managers,
and patient/consumer representatives) and those indirectly involved (collaborating/inter-related
Table 19.3 Stages in a PBMA priority setting exercise

1 Determine the aim and scope of the priority setting exercise
Determine whether programme budgeting and marginal analysis will be used to examine changes in
services within a given programme (micro/within programme study design) or between programmes
(macro/between programme study design).
2 Compile a programme budget
The resources and costs of programmes may need to be identified and quantified, which, when
combined activity information, is the programme budget.
3 Form a marginal analysis advisory panel
The panel is made up of key stakeholders (managers, clinicians, consumers, etc.) in the priority setting
process.
4 Identify options for (a) service growth (b) resource release from gains in operational
efficiency (c) resource release from scaling back or ceasing some services
The programme budget, along with information on decision-making objectives, evidence on benefits
from service, changes in local health care needs, and policy guidance, are used highlight options for
investment and disinvestment.
5 Determine locally relevant decision-making criteria
To be elicited from the advisory panel (e.g. maximizing benefits, improving access and equity, reducing
waiting times, etc.), with reference to national, regional, and local objectives, and specified objectives of
the health system and the community.
6 Evaluate investments and disinvestments
Evaluate in terms of costs and benefits and make recommendations for (a) funding growth areas with
new resources, (b) moving resources from 4 (b) and 4 (c) to 4 (a).
7 Validate results and reallocate resources
Re-examine and validate evidence and judgments used in the process and reallocate resources according
to cost-benefit ratios and other decision-making criteria.
THE WAY FORWARD BALANCING ECONOMICS AND ETHICS
providers, policy-makers, finance/information personnel, ethicists, organizational behaviourists,

health economists, health services researchers, and community representatives). Community
stakeholders can play an integral part in the process, including defining appropriate criteria for
decision-making based on community values and ensuring the needs of specific groups within
the community are addressed. The advisory panel is responsible for: determining locally relevant
decision-making criteria; identifying service options for investment and disinvestment; evaluating those options by considering decision-making criteria, available evidence and local data; and
making recommendations for resource allocation.
Options for investment and disinvestment are generated from data gathered in constructing
the programme budget, along with information on decision-making objectives, evidence on the
benefits of existing and potential new services, changes in local health care needs, and policy
guidance [32]. This may include identifying services that can potentially be provided as effectively using fewer resources, as well as identifying services that should receive fewer resources
because they may provide less benefit per dollar than one or more of the investments.
Investments and disinvestments are then evaluated in terms of both their costs and benefits,
where benefits may be expressed in effectiveness, utility, or monetary terms. Published evidence
on the benefits from services can be used (where available). Where published evidence is unavailable, expert opinion can be used to estimate benefits using decision-analytic techniques [33].
If the principle of maximizing benefits from scarce resources is being followed, resources should
be reallocated from services with lowest ratios of benefit to cost to those services with the highest
ratios of benefit to cost. Importantly, the implications of changes in the configuration of services
in terms of other decision-making criteria (e.g. access, equity, waiting times, etc.), in addition to
costs and benefits, should be assessed. Defining these criteria is also useful when no evidence
exists; so expert opinion can be used to inform judgments about the performance of investment
and disinvestment options.
Recommendations for resource allocation are based on the evaluation of investments and disinvestments described earlier. The process can then be repeated over a period of time so that
services which are more difficult to evaluate, or change, are progressively assessed. By sequentially repeating the process, the emphasis of PBMA is gradually to move towards the goal of
maximizing benefits for a given level of resources. In this way, use of the PBMA framework is
relevant regardless of the total amount of resources available.
A major limitation of many PBMA studies has been the lack of high quality effectiveness evidence available for use in marginal analysis. Such studies have often relied on experts subjective
estimates of effectiveness where data is not available. However, two recent programmes of research
in cancer control have sought to address this limitation. The first, based in Australia, employed
systematic reviews and meta-analyses of effectiveness evidence in conjunction with Disability
Adjusted Life Years (DALYs) as outcome measures to set priorities across a wide range of cancer
control programmes (see Application 19.4) [34,35]. The second research programme is based in
British Columbia, Canada, and is using methods drawn from health technology assessment in
conjunction with Life Years and QALYs gained as outcome measures to set cancer control
priorities (see Application 19.5).
The way forward balancing economics and ethics

Recent developments in the health policy literature have highlighted the need for an interdisciplinary approach to priority setting. In particular, a number of authors have argued that the search
for a rational set of decision-making rules in no longer adequate; and that researchers and decision-makers also need to focus their attention on the priority setting process itself [1,36,37].
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Application 19.4 PBMA: cancer control in Australia (DALYs)

The Cancer Strategy Group (CSG) of the National Health Priorities Committee in Australia
trialed a PBMA approach that incorporated the use of Disability-Adjusted Life Years (DALYs)
as a measure of health outcomes in order to inform the development of the National Cancer
Strategy [40]. Characteristics of the PBMA method adopted included a strong focus on the
marginal analysis component of PBMA, the incorporation of an evidence-based approach,
and the adoption of a two-stage approach to the assessment of benefit involving both technical aspects (cost-per-DALY recovered; level of evidence) and judgment aspects (equity; size
of the problem; acceptability to stakeholders; and feasibility of implementation) [40].
Eight options for change, involving both investments (additional expenditure) and disinvestments (reduced expenditure) were evaluated and ranked (separately) according to their costper-DALY results (see Table A1). Options evaluated included primary prevention, early
detection, treatment, rehabilitation, and palliation programs. All options were compared in
terms of DALYs recovered or lost; that is, the extent to which investments reduced the DALY
burden of cancer, or disinvestments increased the DALY burden, in the Australian population.
All investment options were considered suitable for inclusion within the National Cancer
Strategy, with the lowest ranked option (colorectal cancer screening) having a net cost-per-DALY
recovered of $10,300. Of the two disinvestment options evaluated, one (extending the interval for
cervical cancer screening from two to three years) was considered suitable for implementation.
There was general agreement amongst the members of the CSG that PBMA represented a
significant step forward in cancer control decision-making methods. In particular, the incorporation of the best-available evidence was strongly supported. The CSG concluded that
although there were elements of the PBMA process that could be improved upon, the process
had the potential to play a valuable role in cancer control planning in Australia.
Table A1 Ranking of Australian PBMA investment options
Programme
Gross costs of
Net cost after
DALYs
new programme health cost savings recovered
$AU millions
$AUmillions
Cost per DALY

(based on gross
costs) $AUD
Reduce prevalence of smoking 8.95

by coordinated strategies
Savings of 39.1
10,559
Dominant
Reduce skin cancer by

national coordinated
SunSmart campaign
2.53
Savings of 37.4
9,965
Dominant
Increase consumption of
fruit and vegetables by
coordinated campaign
2.46
Savings of 12.2
3,626
Dominant
Improve psychosocial care for 4.85

breast cancer patients by
providing breast care nurses
Not assessed
5,186
935
Improve psychosocial care for 25.70

cancer patients by providing
psychologists in cancer centres
Not assessed
4,849
5,300
Introduce a national
53.30
colorectal screening program
at ages 5569
38.1
3,187
16,724
THE WAY FORWARD BALANCING ECONOMICS AND ETHICS
Application 19.4 PBMA: cancer control in Australia (DALYs) (continued)
The three prevention programmes shown were estimated to produce health gains with net
cost savings, as the reductions in health costs exceeded the costs of implementation; hence the
result is dominant. Several other interventions were also considered, including the effects of
some decrements in services, such as increasing the screening interval for cervix cancer [41].
Any priority setting process inevitably raises a range of ethical questions. Ethical questions
relate to the need for any priority setting process to be fair, accountable, and transparent. That is,
irrespective of the final resource allocation recommendations, importance may be placed on
whether the process itself is fair [38]. One approach to examining fairness in decision-making
processes is the ethical framework of accountability for reasonableness or A4R [39]. Within the
A4R framework, a priority setting process is considered to be fair if it satisfies the four conditions
required to demonstrate accountability for reasonableness. These conditions relate to publicity,
relevance, appeals, and enforcement (see Table 19.4).
In order to ensure publicity of priority setting processes, decisions and their rationales should
be communicated to internal and external stakeholders (health service staff, patients, the general
public, and so on) in a transparent manner. Information exchange is a two-way process, focusing
on building a shared understanding of the need for priority setting, goals of the process, decisionmaking criteria, how the process will work, and resulting decisions. Focus groups or individual
Application 19.5 PBMA: cancer control in British Columbia,

Canada (QALYs)
The British Columbia Cancer Agency (BCCA) is developing a novel, modified PBMA approach
to help decision-makers set cancer control priorities in British Columbia. Innovations to the
PBMA framework include the incorporation of local cost and outcomes data, and published
QALY evidence to conduct health technology assessments using Markov models. The study is
guided by a steering committee of BCCA senior management, tumour group leaders,
surgeons, nurse managers, finance/administration staff, and academics.
In the first year of the study, three pilot programme areas were identified for analysis: (1) the
use of an expensive drug, trastuzumab (Herceptin) as an adjuvant breast cancer treatment;
(2) increasing the frequency of screening mammography for women with high mammographic density (who may be at increased risk of breast cancer); and (3) the use of PET/CT
scans in non-small cell lung cancer (these investigations are expensive but may give better
information about the cancer and avoid some unnecessary treatment). Advisory panels, consisting of clinicians, decision-makers, data experts, and researchers, were formed for each of
these programme areas. The panels were charged with identifying decision-making criteria and
assisting the research team in constructing Markov models to undertake cost-effectiveness
analyses. Models were built using high-quality clinical and BCCA administrative datasets to
yield economic evidence to assist in informing decision-making in each program area. Economic
evidence was generated in each programme area, with incremental cost-effectiveness ratios
ranging from $35,000/QALY to $120,000/QALY, and results have been used to inform resource
allocation decisions at the provincial level.
375
376
Table 19.4 Checklist for ethical considerations in priority setting processes

1 Ensure publicity of priority setting processes
Priority setting processes and decisions, and the rationales for those processes and decisions, should be
made accessible to managers, doctors, patients, and the public
2 Ensure relevance of priority setting processes
The rationales for priority setting processes and decisions should be based on principles, reasons, and
evidence that managers, doctors, patients, and the public can agree are relevant to deciding how to
meet the diverse needs of the community given resource constraints
3 Establish an appeals mechanism
An appeals mechanism should be established for challenge and dispute resolution regarding priority setting decisions, including the opportunity for revising decisions in light of further evidence or arguments
4 Establish an enforcement mechanism
Voluntary or public regulation mechanisms should be established for the priority setting process to
ensure that the first three conditions are met
meetings with stakeholders can be used to exchange ideas and information concerning values,
needs, and opportunities for service improvements. Newsletters to health service staff and town
hall meetings can also be effective mechanisms for communication.
Ensuring relevance of the processes involves developing a rationale for priority setting decisions and relevant decision-making criteria. Documents describing the organizations mission,
vision, and values provide a useful starting point, but as discussed hereunder, eliciting criteria
requires careful consideration of a wide range of potentially conflicting viewpoints. An advisory
panel of key stakeholders should then review the best available evidence on the services being
appraised, and evaluate their performance against chosen decision-making criteria. It is important to recognize that decision-making will typically be based on multiple criteria by stakeholders
from multidisciplinary backgrounds. Stakeholders should understand the process, be allowed to
present their views, express conflicts of interest, and be receptive to external advice when needed.
Roles and responsibilities of stakeholders should be outlined clearly at the outset, by developing
and discussing terms of reference.
Establishing a transparent appeals (or revision) mechanism entails developing a formal
decision-review process based on explicit decision-review criteria. Decision review ensures that
decisions are reasonable based on available evidence and local circumstances. Decisions may be
reviewed in order to improve quality for a number of reasons, for example, if procedural rules are
violated, if new trial data is published, or other new evidence comes to light.
In establishing an enforcement mechanism, leadership by senior managers and executives is
critical. Experience from both the PBMA and A4R literature suggests that senior management has
considerable influence over whether other actors engage in fair play or not. Facilitating group and
organizational learning can also reduce the extent to which actors seek to game the system.
However, priority setting is iterative. Monitoring the process and enforcing rules should be an
ongoing process which seeks to evaluate what has happened in the past, what is happening in the
present, and then refines the process for the future.
A primary aim of A4R in this context is to ensure the process is credible to relevant stakeholders
and to reduce the impact of barriers to making effective priority setting decisions. This requires
that the process is perceived to be fair and legitimate so that stakeholders commit to it, its rationale,
and the resulting decisions. Fairness and transparency in the process may help to mitigate practical
problems potentially arising due to resources being shifted from one service to another. In recent
REFERENCES
years, researchers have increasingly aligned the implementation of PBMA with the conditions of
A4R. The added value of A4R lies in its explicit framework for pursuing fairness and legitimacy in
the priority setting process, rather than leaving fairness considerations largely to chance.
All of these lessons learned can be applied in the cancer control context. Whether at the level
of an entire cancer agency, or within specific programmes, moving away from historical and/or
political resource allocation processes to an explicit, evidence driven approach that is based upon
both economics and ethics should serve to improve value for money and increase the perceived
legitimacy of the decision-making process itself. Decision-makers who have used PBMA and A4R
across a range of contexts, including cancer, have commented specifically on improvements in
the use of evidence, greater accountability and defensibility, and, ultimately, better decisions
being made.
Conclusion
The recognition that claims on resources will always outstrip the resources available indicates a
need to set priorities, and to allocate resources according to agreed upon principles and rules.
Many approaches to priority setting have failed to incorporate the fundamental economic principles of opportunity cost and the margin. As a result, decision-makers are often left with suboptimal programmes and growing budgetary pressures. This certainly is the case in cancer
control programmes.
Priority setting requires multi-professional and interdisciplinary research, recognizing that the
challenges that decision-makers face are real-life challenges which transcend academic boundaries.
The added value of an approach like PBMA is in making the priority setting process more explicit and systematic. Such a process can be thought of as a vehicle for drawing evidence into the
decision-making process in cancer control, and combining evidence with the values of the key
stakeholders, which include clinicians, managers, researchers, cancer patients, survivors and the
community. Most importantly, whilst achieving the above, PBMA is based explicitly on the
premise of having to make difficult choices amongst competing claims on scarce resources.
It is important to recognize that we are not proposing an all-encompassing economic, political, and social model of decision-making processes in cancer control. Constructing such a model
would be intractable. Decision-making processes are complex, sometimes idiosyncratic, and subject to unpredictable influences. Instead, we have described some tools drawn from economics
and ethics which can be used to address the challenge of setting priorities in cancer control.
We are proposing a move towards an interdisciplinary and pragmatic framework for priority
setting, recognizing that economists methods provide only one of several sets of tools needed to
inform priority setting decisions.
Acknowledgements
Stuart Peacock and Craig Mitton are Michael Smith Foundation for Health Research
Scholars. Craig Mitton also holds a Canada Research Chair (Tier 2) in Health Care Priority
Setting. Research was funded by Canadian Institutes of Health Research grant no. 162964.
We would like to thank the editors for their useful comments on earlier drafts of this chapter.
The views expressed in this chapter are those of the authors, not of the funding agencies.
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379
Chapter 20
Ethics and the idea of cancer control

Lisa Schwartz1
The term cancer control raises ethical concerns just on first reading. Really the idea of control is
what engenders this attention. Control of what? Control of whom? How will this affect the lives
of individuals?
Most ethics literature related to cancer is dominated by concerns about individuals: individual
patients, and health care providers. Topics tend to focus mostly upon the needs and challenges
associated with consent, disclosure, and decision-making. The history of ethics in health care is
dominated by this type of individual focused question about patients and their care providers,
and the moral challenges they face even create in the attempt to provide compassionate, dignified, quality care. The principles of respect for autonomy, beneficence, and non-maleficence, as
well as the virtues of a good practitioner, have for a long time held the spotlight and focused our
interest when health ethics was being discussed.
With the idea of cancer-control the field broadens. Cancer control is not only directed at
specific individuals, but directs our attention to wider issues, issues of public health, health policy
and other elements of wider interest. This is not to say that cancer control will not have an effect
on individual people, in fact some programmes are explicit about aiming at the health and well
being of individuals and their families, but the process of responding to individual needs is recognized as being part of something wider [1]. Cancer control programmes are attempts at creating
a fully embracing system that is designed to engage at multiple levels. What this tends to mean is
that decisions related to cancer control will have impact on the lives of multiple individuals and
are directed at overall community benefit.
Ethics in health care has taken a similar turn in interests. An emerging literature in ethics is
directed at policy and organizational issues, recognizing that the experience of individual care
occurs within the wider context of politics and policy, institutions, and environmental and social
patterns. Ethics of health policy and organizational ethics are growing fields of enquiry and are
especially relevant to the idea of cancer control.
The chief concerns of ethics of health policy and of organizational ethics are first, ethical process in decision-making, and second, attention to the values and substantive claims that will
inform the decisions. Emphasis on fair process is the interest of procedural ethics. Here critical
analysis is applied to the ways in which public policy decisions ought to be made, who will
be involved, what steps need to be taken to plan, inform, and implement decisions, and how
will appeals be attended to. In the first part of this chapter, I will examine how proposed cancer
control programmes can include ethical procedures and explore the value in their so doing. In
part two of the chapter, I will look more closely at the kinds of decisions that need to be made and
Lisa Schwartz, PhD, Arnold L. Johnson Chair in Health Care Ethics, Department of Clinical Epidemiology
and Biostatistics, McMaster University, Hamilton, Ontario, Canada.
382
ETHICS AND THE IDEA OF CANCER CONTROL
at the ethical values and principles that can be applied to the decision-making processes. So part
one is about how decisions are made, and part two is about what decisions are made.
Part I: Procedural ethics and cancer control

To have an ethical procedure promotes justice by helping to ensure fair process. Regardless of the
outcomes, if the process is fair the overall results will be, to some extent, justifiable and the results
more trustworthy. Legal theory demonstrates exactly that. The legal system would not be just
without fair, reliable processes which are predictable and stable. If this were not the case, the system would fail to give direction and fail to make us feel secure in the knowledge that we can assess
and anticipate when we do something which is legally condoned and when we do not. There is
something about the stability and predictability that makes it fair because everyone who knows
about it can act accordingly without fearing surprise sanctions. This belies certain qualities of the
process that make it just. In the first instance, it must be transparent so that everyone who may
be subject to a given law will be able to find out what it requires, permits, or prohibits. It must be
fairly applied, so that we can anticipate its application regardless of who is subject to it; also it
must be somewhat stable so outcomes can be relied upon. This reliance on procedure is not of
value only in law. What law offers is an illustration of the importance of fair and reliable process
that makes a system just, but these qualities are relevant elsewhere as well, and in health care most
certainly. Procedural ethics is valuable in and of itself, but it is also instrumental in fostering and
securing trust and cooperation because it demonstrates fairness and reliability [24].
The many ethical questions that emerge from the very idea of cancer control are the sorts
that can be resolved, at least in part, by appeal to fair processes. How ought control to be applied?
Who ought to make policy decisions about cancer control? What if the decisions are not universally applicable? Can it incorporate an appeal process? All of these emphasize a core belief in
procedural ethics, that integrity of process is at least as important as the outcome and sometimes
more important [5].
Of the many proposals for a procedural ethics, the most frequently sighted and most relevant
to cancer control are the following:
Inclusiveness
Stability
Review mechanisms
Right of appeal
Transparency
Pertinence to social values and relevant knowledge or evidence
Timeliness and efficiency
Collaboration
I will examine the relevance of these to formulating an ethical procedural framework for cancer
control. The embracing of diversity and inclusiveness, the role of transparency, stability and
collaboration, and the requirement of review and appeal, are all core to a programme for cancer
control.
Inclusiveness
To engage the public and specific stakeholders in the process of decision-making is generally
recognized as morally significant. Lawrence Solum [6] refers in legal scholarship to the
Participatory Legitimacy Thesis: it is (usually) a condition for the fairness of a procedure that
PART I: PROCEDURAL ETHICS AND CANCER CONTROL
those who are to be finally bound shall have a reasonable opportunity to participate in the proceedings. Solum states that the
Participation Principle stipulates a minimum (and minimal) right of participation, in the form of
notice and an opportunity to be heard, that must be satisfied (if feasible) in order for a procedure to be
considered fair. (Brackets from the original) [6].
Inclusiveness by using some form of stakeholder consultation is clearly important to the

process of developing cancer control policy. In the first instance, cancer control programmes will
have implications for the entire community, even those who are fortunate enough never to be
touched by cancer in their lives, because the resulting decisions regarding funding, accessibility,
and available choices will affect everyone. Within the constraints of budgets and other resources,
the decision to fund cancer control, prevention, care, etc. necessarily means a depletion of generally available resources. This may be believed justifiable, but it necessarily entails that some health
opportunities will be impeded by under-funding while others thrive. As a result of their far reaching impact, decisions about funding cancer control programmes ought to be made with information about preferences, challenges, and concerns of those who will live with the outcomes.
So the stakeholders in cancer control include the broad community to some extent. This may
be the case for some sorts of wide decision-making, but not necessarily for all, and for more
precise decisions we will do better to consult specific stakeholders. Identification of relevant
stakeholders will be based upon expertise and experience and include those people who can
shed light on and relevantly inform decisions. Inclusiveness ought to be broad in some cases,
narrow in others.
Public consultations and surveys are therefore crucially linked to fair process. Mechanisms
such as these are required for a variety of reasons reasons that dictate the types of methodologies
that ought to be employed. Attention needs to be paid to how public engagement methods work,
and the different types of outcomes it can produce [7]. For example, if policy-makers want to
learn about the specific health concerns affecting a population, they can engage in public consultation to elicit debate and conversation to create a ranking or consensus about generally approved
priorities [8]. However, a different method is required if policy-makers want only to inform the
public of decisions already made. The two types of approach are sufficiently different and it would
be a mistake, even morally wrong, to do one when the other is required, because it would mislead
the participants and give them a false idea of the kind of input and uptake they can expect their
ideas to have. Misleading uses of public consultation could induce public opposition not because
outcomes are believed to be unacceptable, but because the process was misleading and therefore
not trustworthy [9]. Because cancer control programmes and developers rely on public trust to
maintain effectiveness, the processes by which they engage with the public need to be chosen carefully and applied fairly.
Inclusiveness is relevant to every area of cancer control programmes. Research should be
informed by, and to a certain extent guided by, public consultations or at least some form of
collaboration with beneficiaries such as patients, families, and communities. This will help keep
research relevant and help respond to needs that might otherwise go neglected because they are
not within the grasp of researchers who do not live the experience of having cancer. Decisions
about the areas of research that will be included ought also to be open to inclusiveness. Small
groups of individuals suffering from rare forms of cancer could be excluded or ignored if they are
not heard in the process. Decisions about priority setting can lack inclusiveness when they focus
on majority interests and thereby marginalize minority interests.
The research agenda for cancer control has broad ranging impact and as such ought to include
a broad range of interests and innovators. Wide consultation is necessary to ensure that the wider
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384
research agenda is set fairly. The research agenda is a broad term here meaning all the elements,
agencies, resources and people who are part of determining what research will be done and who
will receive funding to do it. In order to promote wide ranging, innovative research, it is necessary
to involve the public and also to ensue that opportunities are made available for novel concepts
to be included and supported by resources. The example of the relevance of viruses in both
causes and treatments of cancer is an excellent example of how important it is to be able and
willing to entertain even bizarre or apparently vague contributions to research. We cannot know
when one of these will prove useful or even advance a new paradigm for the approach to cancer
control.
Inclusiveness in policy development, research, system review, and improvement are all
necessary parts of procedural ethics.
Stability and reviewability

Stability is desirable because it permits actors to expect and predict the process by which decisions
will be made and applied. For example, there is a certain stability in the way decisions about funding of treatments or programmes will be made. As a result, drug manufacturers can estimate in
advance how long it will take for a drug to go from research to approval for drug funding by a
government. The long trajectory can be estimated and patients, hopeful and awaiting new treatments, can anticipate when they will have access, or funded access to a particular medication. If
the rules were unstable they would be unpredictable and no one would be able to reliably navigate
the systems that apply to, for example, access to care and treatment, or decisions about funding
and prevention.
On its own, however, stability is not infallible. There is virtue in the rules remaining stable so
that all players know the rules of the game. However, stability can cause its own problems. Stable
rules can become outdated, new information and counter-examples can shed light on weaknesses
and illuminate where changes need to be made. So stability needs to be tempered with review
and be open to the possibility of change or response to special cases. No process is truly just if
it is not subject to regular review. John Stuart Mill noted that rules become dogma if they are
not subject to regular reconsideration and challenge [10]. A system for cancer control will need to
be extremely agile in its review processes because the landscape of cancer prevention, research,
treatment, and experience undergo such rapid change. To return to our example, historically the
link between viruses and human cancer was generally rejected, but it has now become one of the
most promising avenues of cancer prevention and treatment. As scientific paradigms change, so
the rules (policies and treatments) that govern them need to be adjusted in response.
Appeals
Justice requires review of the processes used to make decisions. However, not all rules need to be
changed and some only need to yield temporarily for the interests of a few. In addition to regular
review, the process must also permit individuals to appeal general decisions, so that the broad
decisions of cancer control programmes are sensitive to the differing needs of the different individuals they affect. An example of a useful appeal mechanism is where appeals are made through
compassionate access mechanisms that ask the health care provider, patient, doctor, nurse, social
worker, or other to make an appeal for access to a drug not yet approved or funded by a system.
These mechanisms are essential elements of just and fair access for individual patients whose needs
are not met within the established decisions of a cancer programme.
No matter their importance, there is a lingering injustice in the appeals mechanisms that ought
to be attended to for the mechanisms to meet procedural ethics standards. Appeals need to be
made and heard effectively. This may require that the system offer an advocate for the person or
the group making the appeal. Otherwise they are left to navigate a potentially complex system and
create a persuasive justification on their own. Most patients do not have the resources to accomplish this adequately. It leaves them vulnerable to a process that favours expertise. The process is
unfair unless an advocate is available who is familiar with the system and who has the vulnerable
partys interest at heart. It is the case that few health care providers are adequately trained to write
effective appeals for their patients, many do not even realize the mechanisms exist until they
require them and then find themselves having to write a letter that is sufficiently
persuasive to successfully gain access to the care the patient is believed to require. It is incumbent
upon our professional training schools that they at least draw students attention to the existence
of appeals mechanisms, and ideally provide training to ensure the best case is presented for
patients relying on them. For example, preparing health care professionals with knowledge of the
system, options, and examples of letters of special appeals, as well as opportunities to practice and
receive feedback on appeal letters they write. Otherwise, like a person who confronting a complex
legal system will stumble and possibly fail without a lawyer to advocate for them, so patients will
suffer and miss out without an adequately trained representative to advocate for them in the
complex maze of the health care system.
Thus appeals mechanisms themselves need to be sensitive to fair process. Not all patients
can advocate for themselves, especially when they are fragile with illness and vulnerable to the
complexities of the system they must navigate. It is worth noting that the existence of an appeal
process does not mean that every appeal will be successful, it merely introduces an essential
element of fairness. Here again, clarity of process, and stability of the rules to be followed are vital
to just and fair application of an appeal process.
Transparency
Throughout this discussion there has been an implicit suggestion of the importance of transparency to fair process. Transparency permits scrutiny and helps build trust because observers feel
there is nothing hidden in the process. It is a mechanism of support for the other elements
of procedural ethics because it permits the public to be engaged in an informed way, not trying to
guess at the reasons for decisions. It makes rules and outcomes clear and accessible, and thereby
makes opportunities for review and appeal possible.
Transparency is a term we hear a great deal of and one that is sometimes embraced without
consideration of how it ought to be best applied. Many see it as crucial without examining why it
is important, and as a result we have seen examples of how it has run afoul. The classic example
of this is the problems associated with merely posting surgical league tables without contextualizing the results. So the morbidity rates of a collection of surgeons might be posted with ranking
for high morbidity and low. It may seem like useful information to patients in a position to select
a surgeon, but it is not very helpful if it is not accompanied by freedom to choose or by more
detail. Obviously the types of disease the surgeons specialize in will be relevant. Cardiac surgeons
and brain surgeons may work with greater risks than those specializing in surgeries of the hand.
In addition, the type of surgery the surgeon performs is relevant, surgeons who perform challenging procedures such as in utero techniques will also face challenges other surgeons do not. Also,
experience and context will be relevant. Surgeons who work in communities that have high
co-morbidities or with patients with more advanced stages of illness are also likely to see more
deaths. This is not because they are less skilled than their colleagues, but may even be because they
are more skilled and therefore relied upon to accept more difficult cases. Information must be
contextualized to make a meaningful difference to those who rely on it.
Thus, transparency in and of itself is not always a helpful part of process. It is important, but
information needs to be made relevant to those it is intended to inform. Otherwise it can even
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create confusion as information overloads the process causing delays while it is sorted through or
even creating distracting impediments.
Pertinence to social values and relevant evidence

All decisions need to be made on the basis of information. A process that includes gathering and
consideration or inclusion of relevant information is mandatory to fair process and to reliable
outcomes. The concept of Evidence-based Practice is essential to and well respected in health care
delivery. It is also at the foundation of sound development of good practice guidelines and health
policy. An ethical procedural framework will incorporate research and evaluation of accepted
practice to inform decisions about funding and priority setting. Mechanisms to incorporate both
relevant research evidence and standard or innovative practices are a natural aspect of sound
process. So a cancer control programme must involve schemes for incorporating published information and as far as possible even unpublished, inconclusive, or negative finding research (for
example through clinical trials registration). Availability of information, development of new
information through the fair funding of research, and the determined incorporation of empirical
findings in decision-making are all part of ethical process.
Scientific evidence does not stand alone in its usefulness to fair decision-making processes. This
sort of information is not isolated from context and so values, beliefs, and social norms have a role
to play as well. The evidence of empirical research needs to be sorted through and understood
within the context of the values and ideals of a community. Programmes in health care such
as one for cancer control will sort out and impose priorities, and reject the relevance of certain
proposals or findings. In a fair process, this will be done in a manner consistent with the values of
the community in which they will be applied. So the evidence and knowledge must be considered
and used to make decisions that reflect the known values of that community.
A communitys values will not always be explicit or evident. Where they are not, time and effort
must be given to working out what they are and validating them through general consultation
with the communitys members. In some places, however, these values are more explicit.
Institutions often have vision statements to help clarify values. Countries, states, and provinces
will make their statements in constitutions or public acts, such as the Canada Health Act [11].
These statements explicitly instantiate values which can be applied and inform fair process, such
as accessibility of care, fair distribution, and commitments to high quality. Part II of this chapter
will explore what these values might be; this section is only intended to emphasize that values are
relevant information in the decision-making process and ought to be used to steer policy decisions in a programme for cancer control.
The combination of empirical, scientific data and the accepted values of the community need
to be part of decision-making in health care. Neither can stand in isolation, but both must be used
to inform and help interpret best processes and decisions. Decisions made in this way will be
more easily justified and embraced by the people to whom they will apply.
Timeliness and efficiency

The value of a process that permits functional, inclusive, and accessible decisions in a timely
manner is crucial to fair ethical process. Nowhere has this been more clear than in the area of
cancer control. The lives of individuals depend on rapid generation of, and responses to, new
knowledge and information. This does not mean rushing blindly into accepting every bit of new
information to make hasty, unconsidered decisions. It does, however, mean dedication of mechanisms and resources for the creation of and response to new information. Whether this be the
funding of promising new research or hearing the appeal from a group of patients with a rare
form of cancer, a system needs to be in place to keep the process moving and not to impede it by
leaving it under-resourced or overloaded. Shared information, processes, and other resources will
ensure that the best use is made of scarce resources and will make efficient use of what resources
are available. Given what is at stake, namely the suffering and deaths of patients, an ethical process
will be one that is careful and attentive, but also rapid and efficient.
Collaboration
A procedural element common to the vision statements of cancer control programmes is collaborative process. This is relevant to the discussion in part II because it is a value in many contexts,
but it is discussed here because collaboration is described as a functional mechanism for achieving
the goals of cancer control.
Collaboration is applied to cancer control in more than one way. It is relevant to care of
individual patients, where multidisciplinary approaches are advocated to give patients wide
access to a variety of care to meet the complex experience of cancer. So a given patient will receive
care from medical oncologists working with radiation oncologists, pathologists, and laboratory
technicians who diagnose, cardiologists who monitor the long-term effects of chemotherapies,
pharmacists who prepare and help monitor treatment, nurses who deliver therapies and nurses
who provide supportive care, psychologists and social workers who help patients and their
families cope, and so on. This multidisciplinary collaboration is a complex but highly worthy
process that permits the patient to access expert and experienced care as it is needed. It is also a
complex system that requires communication and a degree of focus, guidance, and advocacy to
assist patients to make the most of what may be available to them.
Equally relevant to procedural ethics is collaboration at the level of policy, research, and
agencies. It is clear that a partnership approach is the most productive and efficient means of
providing cancer control. Value of coordinated efforts is seen in all the documents related to
cancer control and there are good reasons for this. Collaborative mechanisms that assist and
permit agencies to support one another and avoid unnecessary overlaps are extremely important.
For example, readily accessible patient information through adequate communication and electronic health records can make the process of obtaining appropriate care more accessible.
In research, collaborative methods that incorporate the goals and needs of patients will promote relevancy and effectiveness. Not all research needs to be collaborative in this way, but many
communities have found it illuminates directions and contributes to more successful outcomes
to begin by taking account of the perceptions and experiences of the potential benefactors of the
research.
Researchers ought also to be encouraged to share information at early stages. This is not just
a requirement of academic freedom, important in its own right, but it will also contribute to rapid
growth of research and progress towards successful findings. Secretiveness in research is unethical
if it obstructs or delays productive outcomes. Pressures from private interest groups that aim to
profit from protecting intellectual property and patent interests will no doubt take issue with
certain forms of collaboration. They need to consider that the first goal of the research is to aid
those in need, and the second goal to promote shareholder profits. New ethical models of business practice demonstrate that high ethical standards, even to the extent of a little self-sacrifice is
actually good for business and can contribute to financial success by promoting public faith and
approbation [12]. Collaboration of this sort is beneficial to all.
Collaborative practice and mechanisms that assist collaboration can also lead to better policy
decisions. The aims of knowledge translation are to encourage communication and understanding along the continuum from bench to bedside to facilitate more efficient process. In between,
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experts in scientific knowledge need to be able to collaborate with policy-makers in order to

inform decisions about priorities to set, legislation to apply, invoke, or change. For example,
laboratory research and clinical trials outcomes produce information necessary for making drugfunding decisions. Collaboration between the various players, researchers, trialists, clinicians,
patients, and policy-makers, make it possible for policies to be based on evidence and reflect the
realities of care delivery and living with the outcomes.
Finally, the mission statements of various cancer control projects emphasize how collaboration
promotes efficiency and eliminates unnecessary redundancy. This is valuable as long as it is tempered by the realization that efficiency is not the same as stretching resources beyond capacity.
The limitations of procedural ethics

Procedural ethics is useful for guiding how decisions ought to be made, and the elements outlined
here are arguably relevant to the creation and sustenance of a programme in cancer control. Each
of the elements is important to ensuring that fair process is applied across a cancer control programme, ensuring inclusion, review, appeals, transparency, relevance, timeliness, and collaboration in policies that will be applied in a cancer control programme. Nevertheless, we must not place
too much stock in procedure alone. The rules that guide decisions are important, but they offer no
substantive insights as to what those decisions ought to be. They tell how we ought to conduct
ourselves fairly, but not what it will mean to do so. In isolation, pure dedication to rule-following
can even be dangerous. It lacks grounding in moral values that guide the substance of our choices.
Some say that emphasis on process implies some sort of neutrality, which may be highly valuable,
but not if applied blindly without compassion and vision. Applied this way, procedures leave some
people unfairly treated, alienated and marginalized. Neither can it account for the degree to which
values, ideologies, and other commitments are consciously or unconsciously applied to the process
[13]. Explicit acknowledgement of value preferences will enhance the process by making it more
fair, as well as making transparent why decisions are being made in the way that they are.
Substantive questions about the values that will be embraced and prioritized in a cancer control
programme must therefore be addressed. Otherwise they are in danger of being ignored in favour
of mere rule-following. While the elements of procedural ethics discussed herein are all very
important, they are just a structure of rules that need to be fleshed out with substantive claims
that demonstrate ideals such as how we value equity, liberty, and compassion. Part II offers an
examination of the issues and concerns that will help illuminate what values ought to be encouraged in a programme for cancer control.
Part II: Substantive directions for ethics of cancer control

The many cancer control projects emerging globally govern themselves according to expressed
visions and value statements [1,1417]. Statements are listed on websites, in reports and posted
on walls and serve the useful purpose of reminding contributors to, and beneficiaries of cancer
control of the intentions, directions, priorities, and in some cases the limitations, of a given programme. They are there to help guide the motivations and actions of the players and clarify expectations. They are also meant to be embodied in the specific actions of individual actors in the
programmes, and to be called upon to help resolve conflicts and make difficult decisions. While
each project will express these values differently and select them differently, there is bound to
be some overlap between them because the common goals that drive each project also help to
define the values they endorse.
What are the values cancer control ought to embrace? How can they be put into action in a
given decision? Existing social values and political contexts will have a role in defining the values
PART II: SUBSTANTIVE DIRECTIONS FOR ETHICS OF CANCER CONTROL
embraced by a programme. The realities of the health care context, systems of payment, accessibility, and portion of gross national product available for health care are all factors that will impact
on how values are selected. But values are dependent as much on ideals and normative beliefs as
they are on actualities and existing social norms. So while the set socio-political context will shape
values, they will also be tempered by critical analysis of how a programme ought to shape itself.
The difference between how things are and how things ought to be needs to be attended to in the
process of deciding what vision and values will direct a programme in cancer control.
In this section, the ideals and values of a just health care system will be explored. The proposal
offers a partial vision of how things ought to be in cancer control, and are guided by a normative
preference for justice in health care. This inevitably invites discussion of health equity, which in
turn raises problems associated with social determinants of health and how they impact upon
equity and justice. The social determinants are a useful framework for bringing social and health
issues together; however, they raise a lingering philosophical problem related to privacy and selfdetermination which needs to be attended to in order to balance potentially paternalistic health
protection-oriented values with values of personal liberty. This vision and balance must be examined here in order to attend to the very idea of cancer control.
Values of a just health care system

Literature on the foundations of a just health care system describes certain fundamental
elements. Allen Buchanan [18] proposed the following as values any health care system ought
to embrace:
1 Universal access
2 Access to an adequate level of care
3 Access without excessive burdens
4 Fair distribution of financial costs to ensure 1 and 2
5 Fair distribution of the burdens of rationing
6 Capacity for improvement towards a more just system
This list is simple and probably not exhaustive. It arises from its own context of the US health
care system, so Buchanan makes explicit reference to financial costs. Nevertheless, the content is
still generally applicable and ought to be considered in determining the values that will guide
a programme for cancer control. Buchanans list is similar to a de facto consensus emergent from
the visions in various cancer control statements [1,1417]. The variety of cancer control strategies
worldwide tend to address the same points using different terminology, and can be summarized
in three ways: first, they endorse health equity in terms of access and affordability; second, they
address the social distribution of elements that contribute to health, good or ill; and third, they
incorporate concern for individual and shared effects of illness. I will examine some of these,
although no further examination will be given to the last point on Buchanans list because it has
already been addressed in Part I in relation to the stability, review, and appeals processes required
for the system to be consistent with the goals of procedural ethics. It is sufficient to restate that
review, potential for change in response to new information, and an appeals process are all fundamental to the just process of health care programming, and therefore appropriate to cancer
control programmes.
Equity of access
Access is universally recognized as a priority for cancer control programmes. The Canadian
Strategy for Cancer Control, for example, emphasizes accessibility of care with explicit concerns
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regarding gaps between supply of services and demand, as well as responses to wait times and
geographic availability [14]. This illustrates that the challenges of health equity involve not just
scientific and clinical elements, but are also touched by social issues. As Nobel Prize winning
economist, Amartya Sen notes [19], In any discussion of social equity and justice, illness and
health must figure as a major concern. So it is no surprise that discussions about illness and
health raise social issues in their turn. Thus attempts to address equity tend to be closely associated with access in health ethics and cancer, which raises complex challenges that require multidisciplinary responses from clinical as well as social science perspectives.
Fair share
Health equity and access challenge the existence of gaps in availability, and are social issues of a
particular type, namely that of resource allocation. Priorities for just distribution of resources are
relevant to cancer control in more than one arena. First, in a global context, cancer control is only
one health-related priority worldwide. While cancer is acknowledged as having one of the highest
burdens [20], the combined burdens originating from other diseases and disasters are significant
as well, and unfortunately will compete for the same limited resources. Second, within cancer
programmes themselves resource allocation challenges arise, at the level of patient care (micro
issues), at the level of institutional practice and inter-agency collaboration (meso issues), and at
the level of policy (macro issues). Fair distribution among competitors is one aim of equity.
Prioritizing how resources will be distributed is a persistent question in health care, and will
likely remain so. It is often expressed that simple equality of distribution of resources is insufficient for assessing resource distribution in health care [2,3]. For the most part this is because
equal distribution assumes equal need, but the needs of patients and communities are never
equal. They may have equal merit to be considered, but it is clear that different elements will
impact on need in different ways. Most obvious is that some diseases require more, or more
costly, interventions per individual patient, while other types of diseases are more common and
therefore require that resources must be distributed more widely. Cancer is both more common
and is rapidly becoming more costly to treat [20], so it might appear to deserve a greater share of
health-related resources worldwide. However, other diseases clearly impose significant impact,
especially as they tend to affect people who live with a greater share of other burdens and needs,
(as will be explored as follows in relation to the social determinants of health and equity). The
obvious competitors for global health resources include HIV/AIDS, tuberculosis, and malaria,
diseases that dominate health care resources in lower and middle income countries (LMICs).
These are diseases that touch specific communities so greatly that they cannot be ignored and they
tend to affect people who live with other burdens (health-related and not), so their claim to need
is palpable. It is the unfortunate truth that the needs of the beneficiaries of a cancer control programme are in direct competition with others in equal or greater need. Put like this, it is almost
difficult to ask for any more.
Of course, there is always merit to a need, and no health-related area can be said to be deserving
of absolutely no share of resources. But given the competitive atmosphere created by the combination of need and limited resources, it will always be necessary to make a choice. This means that
there is a strong role for advocacy to promote adequate share of resources available for cancer
research, prevention, diagnosis, care, and treatment. And because the same competition exists
between stakeholders for the limited resources available to cancer, advocacy is as relevant to
ensure fair access to resources among cancer-related needs as it is among wider health-related
needs. Collaborative mechanisms can be employed to help disarm some of this competition by
making more efficient use of resources and share the burdens of illness.
Indeed, in relation to equity of accessibility, Buchanans list implies another social value that
requires a kind of collaboration, and as such deserves explicit mention. The list is founded on
an implicit value that it is worthwhile to share the costs of illness and the burden illness has on
individuals, their families and communities. Such a normative claim is borne out in the way
statistics are reported about the burden of cancer on society. For instance, in 2008 the World
Health Organization identified cancer as a leading cause of death worldwide [20]. To say this is
to make a claim that cancer is a global problem and therefore everyone shares its burden whether
we realize it or not. Because WHO describes cancer as a global problem they can then make assertions regarding the importance of integrated care, partnerships, and the need to facilitate broad
networks of cancer control partners at global, regional, and national levels. These partnerships
imply shared burden, suggesting that it is the responsibility of all to respond, or at least not
obstruct, a response.
There is little doubt about the relevance and urgency of a global collaborative approach towards
cancer control. Equitable access to prevention and treatment for all people touched by cancer
should be recognized as a value in the field, although it is far from being a reality. Costs of care
make it impossible for some to obtain the care they need, and force others to make impossible
choices between health (life?) and devastating financial losses. It is therefore a requirement of just
cancer control within Buchanans model that element 4 be respected so that the burden of financial costs is shared or contained.
Private interests
The costs of cancer drugs and treatments have grown rapidly over the past decade. Where the
price of care doubles and triples even within the span of a single patients life, there is a clear need
to try to contain costs [21]. Private industrys interests in recuperating research and development
costs of new medical treatments is understandable to an extent, but not to the point of exploiting
public and private insurers and, even more problematically, uninsured patients who must cover
the ever increasing costs of medicines. Controls and constraints of excessive pricing are reasonable when patients suffering is ongoing and lives are at stake. Here again, private industry ought
to be encouraged to adopt ethical business models and consider the successes of companies that
employ them [22]. Responsible ethical practices have been profitable for some private companies
and allow share holders to profit and still keep a clear conscience. The rewards of such ethical
practices will come, though sometimes in less than obvious ways. One way is as goodwill marketing that generates interests and trust in a company brand, and could in the long run increase other
benefits such as public willingness to aid in research and development by enrolling in studies and
contributing to tissue banks.
Cost control is a type of cost-burden sharing that will protect against individual patients being
forced to make the choice between their health interests and their financial interests, both of
which are further connected to personal responsibilities such as family obligation. A parent with
cancer should not have to choose to sell the family home in order to obtain care, nor to forgo
treatment in order to feed children. It is because of such scenarios that discussion of equity of
access and distribution of resources reveals other significant moral issues associated with cancer
control, namely the influence of the social determinants of health.
Health equity and the social determinants of health

Pauline Braveman and Sofia Gruskin [23, 24] helpfully describe equity in health care as follows:
For the purposes of measurement and operationalisation, equity in health is the absence of systematic
disparities in health (or in the major social determinants of health) between groups with different
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levels of underlying social advantage/disadvantagethat is, wealth, power, or prestige. Inequities in

health systematically put groups of people who are already socially disadvantaged (for example, by
virtue of being poor, female, and/or members of a disenfranchised racial, ethnic, or religious group) at
further disadvantage with respect to their health; health is essential to wellbeing and to overcoming
other effects of social disadvantage. [23].
Braveman and Gruskin thus emphasize the social aspects of equity and associate just access
to care with the elements often referred to as the social determinants of health. Furthermore,
Sen asserts that equity of distribution and access to the resources of health care are insufficient for
rectifying the injustices of inequity in health. Social determinants of health will of course include
the health impact of financial and resource disparities, but they also include much more besides.
Literature related to the social determinants of health argues that health is closely related to social
circumstances. It demonstrates that certain social factors will impact health positively while
others have the opposite effect. Thus, as Sen argues, equity in health is more than just access to
resources of health care but requires attention to social and environmental determinants as well
as the factors that interfere with capability for human flourishing. He states,
An adequate policy approach to health has to take note not only of the influences that come from
general social and economic factors, but also from a variety of other parameters, such as personal
disabilities, individual proneness to illness, epidemiological hazards of particular regions, the influence
of climatic variations, and so on. A proper theory of health equity has to give these factors their due
within the discipline of health equity. [19].
Braveman and Gruskin advise that disparities are connected with wealth, power, and prestige
so systems ought to be assessed to determine whether national and international policies are
leading towards or away from greater social justice in health. Their definition of health equity,
mentioned earlier, offers a means of measuring and evaluating health programmes to determine
their effectiveness at improving the disparities created by the social factors which enhance or
diminish health.
Lung cancer is an excellent case in point. While estimated to cause 1.4 million deaths a year and
have the highest level of morbidity worldwide of any cancer [20], lung cancer is also relatively low
resourced. There are fewer alternatives for lung cancer patients, compared to other disease types
of high impact, most notably breast and prostate cancers which are widespread but fortunately
carry less morbidity. Indisputably, success rates for treatment are lower than for example, breast
cancer; so while breast cancer success tends to be measured in terms of years or months of
additional life, success in lung cancer is usually measured in additional weeks or days. Why this
disparity? Could it be merely the complexities of the molecular differences between the diseases?
We can speculate that lung cancer carries the highest social stigma of the three most common
cancers. Lung cancer is causally linked to smoking and therefore implicitly described as a lifestylerelated cancer that is believed to be self-inflicted, the result of so-called lifestyle choice. This is a
strange sort of double standard as it ignores numerous factors related to the determinants of
health, social, and otherwise. It ignores the addictive nature of tobacco for one, and the extreme
difficulty most smokers have of quitting. It ignores social factors, the pressure to take up the habit,
and for some unbearable stresses associated with trying to quit. It ignores genetic factors; why
some people smoke very little and still develop cancer while others smoke two or three packs of
cigarettes a day and never develop cancer? It also ignores important environmental factors that
may contribute to or cause lung cancer, and account for the number of people who develop the
disease without smoking a day in their lives. We are aware of all of these factors, of its high global
impact, and yet lung cancer is still a stigmatized condition. Even lobbyists and advocates tend to
focus on lifestyle links and smoking. The risk of this, however, is that funders, researchers, and the
general public will not find lung cancer a sympathetic cause because if its connection to smoking
and the implied weakness of will and self-inflicted nature of the disease. The danger is that the
stigma means that while there are special initiatives in breast and prostate cancer, there are few
directed specifically at lung cancer [25, 26]. For example, there is nothing like the proliferation of
campaigns for lung cancer as there are for breast and prostate cancer; relatively little is heard from
lung cancer campaigners except in relation to the tobacco industry and smoking regulation. The
associated stigma is an additional social determinant for the health of lung cancer sufferers.
Sympathetic attitudes aside, given what we know about the social determinants of what starts
and keeps people smoking, and of the environmental and genetic factors that effect lung cancer,
an equitable response requires we provide help for those factors as well and ensure fair access to
resources available for what accounts for the most illness and death worldwide each year.
The ideas associated with social determinants of health are well founded. A project of cancer
control needs to be as attentive to these social issues, such as stigma for reasons described in the
example of lung cancer, power such as the power to advocate for fair access or cost controls, environment such as protection from pollution and toxins in our food and air, geography in relation
to access to appropriate levels and quality of treatment, and distribution such as of funding in
research, to name a few. However, the effects of the social determinants on health do raise a
significant moral concern. If social or other determinants hold so much sway over our health and
our lives, to the extent that we need help to overcome them, then where does personal liberty fit?
We tend to take for granted the ways in which such obvious or subtle determinants place coercive
constraints on personal liberty and private choices, and the social determinants of health help
explain these factors. So is it sufficient justification to override a persons liberty to say smoke, or
work in a high risk area, because by interfering with their self-regarding action we are protecting
them and practicing cancer control?
The value of tolerance and personal liberty

Privacy is widely discussed in health ethics, most often related to access to and protection of
confidential information, such as the gathering of personal health information for the purposes
of research. There is, however, a wider sense of privacy that is relevant to the concerns earlier
expressed on the idea of control. This notion of privacy is rooted in personal liberty, and is
concerned with tolerance and individual freedom to choose how to live, be treated, and die.
If we value this notion of privacy, and most liberal-based democracies do, then the idea of cancer
control will have to be able to accommodate individual choice-making. This may seem obvious,
but it is less so than one might initially think. On the surface, we perhaps do not need to be
reminded that people ought to be free to make the choice to do the things laboratory science and
epidemiological research tell us are good for the prevention and treatment of cancer. We dont
need to be reminded that people have the right to choose to drink alcohol or not, to eat the foods
they choose, or decide whether or not to exercise regularly. The preference seems to be to educate
people about these options and let them choose for themselves, even if their choices involve high
risk behaviour [27].
The notion of privacy tends therefore to be used more broadly than just as a reference to personal information. It is often applied to the private sphere including personal life and the choices
we make. The private sphere is contrasted with the public sphere, and while the borders are
blurred on the subject of ongoing philosophical debate, there are certain things that can be said
to help refine the distinction. Private life is what concerns oneself and ones family in a way that
a claim can be made of non-interference from public or outside forces. What happens in the
family home, in ones personal life, is protected by laws that prevent interference from others,
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such as neighbours, the government, etc. The private sphere is protected to provide space for
individual liberty and flourishing. The public sphere, on the other hand is shared, and it arguably
requires certain constraints upon individual liberty to ensure greater good, such as taxation which
contributes to the benefits of shared community health resources. My home is private and I can
decorate it any way I choose; the park is public and I have to work with others to determine how
it will be composed.
This form of privacy is closely related then to personal liberty. We tend to value personal
liberty greatly, though different social and political ideologies protect it to varying degrees. At its
extreme, the only time liberty is compromised in strict liberal societies, is if the free exercise of one
persons liberty infringes upon the liberty of others [10]. Then the social contract of a libertarian
community will permit the overriding of one persons freedom to protect the liberty interest of
others. Mandatory quarantine programmes are this sort of overriding. If an argument can be
made that all people who carry a particular kind of infection must be quarantined to prevent
spread and protect the public, then the liberty to make a personal, self-concerning choice not to
comply with the quarantine will be overridden and justified by the interests of others.
Where cancer control, or any type of control, is considered, there is a clear blurring of the
private and the public. If priorities are going to be planned, resources allocated and liberties
restricted, then the programme is making a clear instantiation of a preference for overriding of
certain individual liberties and restriction of personal privacy. This is not necessarily a bad thing.
It is a decision that could be made, and has been made in the past, where community decisionmakers have chosen to favour some values over others, for example to favour public interests and
public health over individual interests and personal liberty. A good example of this is the banning
of smoking in cars with child passengers. For the most part, parents are at liberty to make decisions for their children, unless the choices are not in the best interest of the child, in which case
parental liberty is overridden. In addition, some liberties will be enhanced by compromising with
certain limitations, for example paying taxes that contribute to social benefits such as public
schools and hospitals.
In their book Health Promotion: Models and Values, Robin Downie, Carol Fyfe, and Andrew
Tannahill [27] draw a helpful distinction between health protection on the one hand and prevention, promotion, and education on the other. The chief distinction between them is that while
promotion, prevention, and education are seen as voluntary measures that can be offered to
individuals, and in which they may choose to partake or not (e.g. campaigns on healthy eating,
information on the preventive role of exercise in cancer control, and voluntary human papilloma
virus [HPV] vaccination programmes),
Health protection comprises legal or fiscal controls, other regulations and policies, and voluntary codes
of practice, aimed at the enhancement of positive health and the prevention of ill health. [27, p. 51].
Health protection, in this sense, is meant to make healthy choices easier, such as workplace
safety initiatives that legally enforce safety standards and devices. While they override a certain personal liberty to choose to take precautions or not, they also protect employees from feeling pressure
to take risks that would compromise their health. To what extent health protection measures ought
to be imposed is a challenge of balance between personal liberty to choose and protection via the
kind of control which enhances health by decreasing the likelihood that individuals will
encounter hazards in the environment, and that they will behave in an unhealthful manner, while
increasing their chances of living in a positively healthful environment and having a lifestyle which
promotes positive health. [27, p 51].
SUMMARY
Sen has argued for a framework that promotes capabilities for achieving and maintaining
human flourishing and includes health as one of the chief elements of this capabilities index [19].
It would be consistent with this that the sorts of restrictions described previously as health
protective are justifiable because they promote the interests of good health and help to counter
the potentially coercive or pervasive social and environmental forces that make ill health
unavoidable. So while privacy and personal liberty are valued, they can be protected and enhanced
by health protection measures. When these measures are aimed at external forces such as controlling pollution, the protection is more easily enforced. Control of more individual behaviours such
as healthy eating is more obtrusive to individual privacy and is less desirable. Focus ought to be
given to controlling external factors like pollution, and compromise internal factors only when it
is certain to enhance future good and extend personal liberty.
For Sen [19] and Downie [27] and many others, the ability to achieve and maintain good health
is in and of itself a value worthy of promotion. In some cases it may be just an instrumental value,
not valued in its own right but because of its role in promoting human flourishing. However,
more recently, the value of good health has taken on independent worth as a fundamental good
to be promoted for its own sake. The extent to which personal liberty ought to be overridden to
achieve good health, or promote the capabilities of achieving good health, is negotiable. But
we probably ought to be cautious of too much overriding of personal choice and instead enhance
opportunity for creating environments and systems which increase our capabilities to improve
and sustain individual health. Thus control of cancer should not be confused with control of
personal liberty.
Summary
In summary the following ethical concerns have been raised in this chapter. The exploration
is not intended to be exhaustive but to enliven debate, and draw attention to ethically relevant
considerations related to cancer control.
A just approach to cancer control requires ethical procedures and appeal to certain moral
values.
Some elements of procedural ethics are proposed based on their relevance to cancer control
or as they emerge from cancer control strategies.
The limitations of procedural ethics demonstrate how process is not enough on its own
to guide a just system.
Also required are values, existing and normative, that will give substantive direction to a
programme.
Equity is a significant moral value in cancer control.
Equity requires consideration of multiple aspects including resources, geography, accessibility,

inclusion of rare as well as common diseases, and even at the level of research such as access to
funding.
Interests of private industry ought not to override or direct the priorities of cancer control.
Social determinants of health include elements relevant to health equity problems beyond just
financial distribution.
Controlling some of these factors may be desirable and consistent with valuing health.
However, control of cancer should not be confused with control of personal liberty.
395
396
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Chapter 21
Integrating cancer control with control

of other non-communicable diseases
Robert Burton, Jerzy Leowski Jr,
Maximilian de Courten1
The World Health Organization (WHO) estimates for 2005 indicated that 61 per cent of the
58 million deaths from all causes worldwide were due to chronic, non-communicable diseases
(NCD), with cardio-vascular diseases (CVD) (17.5 million), cancer (7.6 million) and chronic
obstructive pulmonary diseases (COPD) (4 million) accounting for half of all deaths (Figure 21.1).
The WHO has pointed out that 80 per cent of CVD and type 2 diabetes, and 40 per cent of
cancer, could be avoided through effective prevention targeting their common behavioural
risk factors: tobacco use, unhealthy nutrition, and physical inactivity leading to obesity [1].
Furthermore, about 20 per cent of cancer is caused by chronic infections and vaccines are
currently available which could prevent almost half of these cancers, which are caused by
the hepatitis B virus and strains 16 and 18 of the human papilloma virus (HPV) family (see
Chapter 6).
In 2008, the WHO action plan for the Global Strategy for the Prevention and Control of NCD
[2] was endorsed by more than 190 governments at the Sixty-first World Health Assembly [3].
This plan aims to guide and catalyze an intersectoral and multilevel response to NCD, with a
particular focus on low and middle income countries and on vulnerable population groups. This
action plan has six key objectives, each with actions requested of WHO, member states, and international partners. The objectives are, in summary:
1 To raise the priority accorded to NCD in development work, and to integrate their prevention and control into policies across government departments
2 To establish and strengthen national policies and plans for the prevention and control of NCD
3 To promote interventions to reduce the main shared modifiable risk factors for NCD: tobacco
use, unhealthy diets, physical inactivity, and harmful use of alcohol
4 To promote research for the prevention and control of NCD
5 To promote partnerships for the prevention and control of NCD
6 To monitor NCD and their determinants and evaluate progress at the national, regional and
global levels
Robert C. Burton MD, PhD, FAFPHM, Professor, School of Public Health and Preventive Medicine,
Monash University, Melbourne, Victoria, Australia; Jerzy Leowski Jr, MD, Regional Adviser, Noncommunicable Diseases, World Health Organization, Regional Office for South-East Asia, New Delhi,
India; Maximilian de Courten MD, MPH, Associate Professor of Clinical Epidemiology, School of Public
Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
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INTEGRATING CANCER CONTROL WITH CONTROL OF OTHER NON-COMMUNICABLE DISEASES
Communicable diseases,
maternal and perinatal
conditions, and nutritional
deficiencies
30%
Cardiovascular
diseases
30%
TOTAL DEATHS 2005
58 million
Injuries
9%
Cancer
13%
Other chronic diseases
9%
Diabetes
2%
Chronic
respiratory
diseases
7%
Fig. 21.1 Non-communicable diseases now cause most deaths worldwide; causes of death,
worldwide.
Source: From World Health Organization (2005) [1, p. 38].
This generic direction applies across all the four major chronic NCD: CVD, cancer, COPD, and
diabetes. This chapter binds this prescription more tightly to cancer and describes why the cancer
control movement, while working for its specific objectives, may benefit from embracing integrated NCD prevention and control approaches in common areas, from addressing the causes of
inequity to synergizing with the movement to renew primary health care. Certain important areas
where cancer control could be better integrated with other major NCD programmes will be considered. These include those which focus on health promotion and on the equitable protection
and maintenance of the health of entire populations: primordial and primary prevention; coordinated multisectoral actions which improve health; and health sector actions on early detection/
screening, and in maintaining and supporting people with NCD in their communities. The
proportion of cancer worldwide that can be prevented through actions which control chronic
infections will not be considered (see Chapter 6). However, integration of some of these actions
into immunization programmes and other strategies which target chronic infections like HIV/
AIDS and tuberculosis requires further strengthening. Specific diagnostic technologies and
treatments of the various cancers, CVD, COPD, and diabetes, and the infrastructure and skilled
workforces needed, will not be considered outside of the context of the systems needed for early
detection/screening and palliation of NCD. Therefore, in general, hospital- and specialist-based
care of individual NCD will not be considered.
In the context of cancer specifically, the WHO and the International Union Against
Cancer (UICC])estimated that in the year 2002 there were 10.9 million new cases of cancer
(incidence]), 6.7 million cancer deaths (mortality), and 24.6 million people living with
a diagnosis of cancer [4]. Therefore, the global mortality: incidence ratio was 0.66, indicating that
most people who were diagnosed with cancer died of it, highlighting the global need for effective
community-based palliative care. Of particular note [5], is that this ratio is highest for males in
developing countries (e.g. Egypt 0.85) and lowest for females in the most developed countries
(e.g. 0.35 United States and Australia). Without effective actions on cancer prevention and
early detection/screening, the WHO and UICC estimate that there will be 16 million new cases
of cancer and 10.3 million deaths in the year 2020, with two-thirds of this cancer burden falling
on developing countries [4].
Alarmed by rising trends of cancer-risk factors and the growing burden of cancer worldwide,
in particular in developing countries, the Fifty-eight World Health Assembly passed, in 2005,
a resolution urging member states, amongst other things, to integrate National Cancer Control
Plans (NCCP) into existing health systems, and to consider an approach in the planning, implementation, and evaluation phases of cancer control that involves all key stakeholders representing
governmental, nongovernmental, and community-based organizations [6]. NCCP and related
programmes have been developed in many countries throughout the world in line with policies
and managerial guidelines proposed by the WHO [7]. The programmes are often maintained as
vertical structures closely linked to, and directed and managed by, specialized oncology institutes
and centres. The positive implication of this fact is that programmes are backed by highly qualified professionals and are based on existing physical infrastructure which promotes scientific
soundness of programmes and their logistical sustainability. The other implication, however, is
that cancer programmes are often more orientated to cancer treatment and research than to other
population health needs. As a consequence cancer surveillance, health promotion, populationbased primary and secondary prevention, and palliative care components are often underdeveloped. Cancer programmes themselves may be inadequately integrated within overall health
systems, and fail to identify and involve important stakeholders in governmental sectors beyond
health as well as potential partners located in the private sector and representing civil society.
It is desirable that cancer control be better integrated with other major NCD programmes
in the areas which focus on health promotion and on the equitable protection and maintenance
of health of entire populations. Cancer should be better addressed in a well-coordinated and
comprehensive way by consideration of the shared social, economic, and physical environmental
determinants and the common risk factors of all major NCD. To be effective and efficient cancer
control needs to be founded on strong public health infrastructure and have operating mechanisms which ensure multisectoral and interdisciplinary coordination at national, regional, and
local levels. For at least five billion of the estimated 6.4 billion humans of the planet (75+ per cent)
whole population control of NCD in general, and cancer specifically, is limited largely to the prevention of exposure to risk factors for which governments can legislate and regulate, for example
through taxation of tobacco and prohibition of advertising tobacco use, and to the provision of
oral morphine for palliating chronic pain. Improvements in socio-economic status can be
achieved by governments through long term infrastructure and workforce investments which
address inequities.
The health care sector has a role in supporting these government actions and implementing
palliative care initiatives. In addition, as primary health care becomes available at the whole population level, programmes of primary prevention, largely behavioural but increasingly medical, as
through immunization and early detection and treatment of secondary risk factors like cervical
dysplasia and hypertension become possible. Wealthier sectors of developing countries usually
enjoy these improvements in NCD control first, and also have first access to the available curative
and supportive treatment and control of the NCD themselves; this inequity transition is discussed further later in this chapter. In this respect, their opportunities to avoid and be successfully
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402
treated for NCD are akin to populations of developed countries, and so they are included in the
estimated 1.4 billion people mentioned earlier. These more fortunate individuals and populations
are not the primary focus of this chapter. The scenarios described, and NCD control measures
considered, are relevant to all, but the focus here is on developing countries and the challenges
they face. However, some developing countries are better placed to confront the coming NCD
epidemic in several regards than some developed countries, where the epidemic is now well established. For example, some developing countries have well developed medical and non-medical
primary health care systems which have brought major improvements in maternal and child
health to large populations. These services can be re-orientated quickly to begin population NCD
primary and secondary risk factor prevention, identification, and treatment, particularly if falling
birth rates in these countries free up resources. Successful population-based demonstration
projects have been conducted in Indonesia, Iran, and Philippines, among others, to reorientate
such services to the prevention of NCD. For palliation of NCD, and particularly cancer causing
pain, well established and externally-funded community support systems for patients with
advanced HIV/AIDS in certain developing countries, for example Tanzania, have the potential to
be further developed to expand home-based palliative care also to cancer patients.
It is in this context that this chapter argues for better governance in the control of the environmental and social risk factors for NCD and social inequalities, and improvements in systems for
preventing, diagnosing early and treating modifiable and intermediate NCD risk factors
and NCD themselves (see Figure 21.2) and finally palliating NCD in their terminal phases. The
government actions and systems needed are common to all major NCD, albeit, for example, that
screening tests for different cancers are as different between themselves as they are from screening
tests for other NCD.
Shared modifiable social, environmental, and behavioural

determinants
A model of causation
There are two complementary models of causation of NCD that can be used to develop
synergistic approaches to integrated intervention.
The WHO report on Preventing Chronic Disease: A Vital Investment [1] proposed a model
of causation that has gained wide currency (Figure 21.2).
UNDERLYING
SOCIOECONOMIC,
CULTURAL, POLITICAL,
AND ENVIRONMENTAL
DETERMINANTS
Globalization
Urbanization
Population ageing
COMMON MODIFIABLE
RISK FACTORS
INTERMEDIATE RISK
FACTORS
MAIN CHRONIC
DISEASES
Unhealthy diet
Raised blood pressure
Heart disease
Physical inactivity
Raised blood glucose
Stroke
Tobacco use
Abnormal blood lipids
Cancer
NON-MODIFIABLE
RISK FACTORS
Overweight/obesity
Chronic respiratory
diseases
Age
Heredity
Fig. 21.2 The chain of causation of non-communicable diseases.

Source: From World Health Organization [1, p. 48].
Diabetes
SHARED MODIFIABLE SOCIAL, ENVIRONMENTAL, AND BEHAVIOURAL DETERMINANTS
The burden of NCD arises from exposure to behavioural and physiological risks modified by
the effects of sex, age, and genes. The risky behaviours (tobacco smoking, unhealthy diet, physical
inactivity, and the harmful use of alcohol) in turn arise out of personal choices facilitated or
constrained by the policy, physical, cultural, and price environments within which people live.
These environments have a micro- and a macro-dimension, for instance ranging at the microend from the price and choice of foods available to a community or household to the macroeffects of globalization, urbanization and demographic transition.
Evidence from the world of cancer and cardiovascular disease suggests that such a conventional
model is extremely successful in explaining both the rise and, in some cases, the fall of these
epidemics. The worldwide downward trend in gastric cancer incidence and mortality in many of
the most developed countries began about 1950 when the widespread introduction of domestic
refrigerators and improvements in animal slaughtering practices resulted in meat increasingly
being stored fresh before eating; salting, drying, smoking, and other forms of meat preservation
were no longer the norm [8]. This was a macro-consequence of industrialization and improved
agriculture, not the result of a public health intervention. The classic curves of the rise and fall of
male lung cancer in various developed countries populations mirrored the rise and fall of tobacco
smoking, albeit the peak of cancer mortality followed two decades or more after the peak male
smoking prevalence [9]. This illustrates the powerful causal link between the two and the potential for primary prevention and the effectiveness of public (population) health actions. The
IMPACT model [10] ascribed around 58 per cent of the decline in coronary heart disease in
England and Wales to the downward trend in population risk factors, with similar results reported
for other industrialized countries. While there is some controversy about the effectiveness of
multiple risk factor interventions at community level [11,12], there is convincing evidence that
population level interventions on specific risk factors such as tobacco and salt are both effective
and cost-effective [13]. The conventional population-level risk factors explain about 75 per cent
of new cases of coronary heart disease [14] and provide ample scope for effective primary prevention; a potential health improvement that would extend, through common risk factors, to many
cancers.
The causation of inequity

Recently there has been intensified attention to the issue of inequity, and the relative burdens
of disease. The WHO Commission on Social Determinants of Health has reported on a synthesis
of the last decades of research on the social gradient in health [15]. This gradient is important for
three reasons:
Human Rights Approach: social gradients in health reflect unfairness in society where segments
of the population are denied the right to the full enjoyment of health that is possible in their
country
Direct Causation: there is evidence that the social gradients themselves operate through various
behavioural, psychological, and physiological mechanisms, and directly cause corresponding
disease gradients in society
Development Agenda: in a global environment the development community is concerned primarily with economic development and poverty alleviation, and is fixed on a narrowly focused
health agenda, to the extent that the Millennium Development Goals even exclude any overt
NCD-related goals or targets [16]. The demonstration of disproportionate NCD burdens in
poor populations is an important advocacy point to address this blind spot in policy, and to
redress it.
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The inequity transition

The issue of inequity in NCD is further complicated by what can be termed an inequity
transition. As a country develops economically, the first segments in society to suffer from
the NCD epidemic are the newly affluent and the urban populations, those with higher socioeconomic status. These groups are then the first ones to have better access to the means and the
skills to control their own risk and are the first to experience improvements, whether through
better prevention and/or better treatment. The poorer segments of society acquire these risks
in turn and the familiar gradients prevalent in industrialized countries then result, leading to
an inequity transition, a migration of NCD burden into poorer countries and disadvantaged
communities. This pattern is witnessed in examples as different as the high rates of premature
death in disadvantaged Russian men [17] or the high risk of diabetes in rural Cambodia [18].
These relative burdens are more difficult to address since they are compounded by the relative
lack of access to health services and by poor income, poor neighbourhoods, poor childhood
experience, and low levels of education among other constraints, all of which are beyond the
control of the individual or the health sector to improve. In essence this transition suggests that
focusing on a narrow range of diseases in developing countries may simply switch the dominant
cause of premature mortality and preventable morbidity from infections now, to NCD later,
without achieving a true improvement in overall adult population health. The NCD epidemic
now sweeping the world is in large part a result of the ageing of populations, which unlike the
environmental, socio-economic, and behavioural determinants of health, cannot be directly
addressed.
A synthesis
Each of the two models described in the earlier paragraphs, socio-economic/environmental and
behavioural, has a set of points for intervention and, barring an ideological bias that favours one
approach over the other, both need to be adopted via an integrated rationale for action to reduce
the burden of cancer and other NCD and their inequitable distribution in society.
The WHO Commission on Social Determinants of Health, amongst other work, set up a series
of Knowledge Networks that delved deeply into some aspects of the evidence for action on health
inequities. One of the networks dealt with the Priority Public Health Conditions and specifically
considered the question of how vertical programmes (such as NCD prevention and control)
would change if they adopted an equity lens. While the network did not formally study cancer
control, this section will describe and adapt the model they used to tease out some of the cancerrelated implications.
The network elaborated a cascade of causal influences that can be used in three ways: to describe
and analyse inequity, to generate options for intervention, and to measure the differences and
monitor progress of any programme of action. The determinants of health cascade through
socio-economic position, exposure to risk, vulnerability to that exposure, to the health outcomes
and their different consequences on the ability to function in society, on length of life, and on
quality of life. These implications are briefly discussed with examples.
Differential socio-economic position

Social standing is a determinant of the risks to which groups are exposed and of the ability to
protect themselves against their effects. Development policies, trade, education, and employment
policies, among others, set the context for health. While they are outside the remit of the health
sector, addressing these causes of the causes [19] through intersectoral action and advocacy
must be a foundation for work to reduce inequities.
SHARED MODIFIABLE SOCIAL, ENVIRONMENTAL, AND BEHAVIOURAL DETERMINANTS
Differential exposure
The broader contexts for health translate into more direct exposure to risk and protective factors.
Trade, fiscal, and marketing policies set the levels of access to healthy foods and their prices.
Employment and welfare policies affect the level to which groups have access to employment and
occupational health and safety as well as access to support in unemployment. Urban planning
policies determine the ease and safety of physical activity in different communities.
Differential vulnerability
The exposures to risk tend to cluster together in ways that are socially determined. The condition
of being a single parent, in an insecure inner city, relatively isolated, with temporary or episodic
employment, poorer quality housing, eating a cheap fast food diet, smoking and abusing alcohol,
is not simply a stereotype but is a way of life for many groups in society. The ability to respond
to such a set of risks is also socially determined. Higher social standing gives one the ability
to control exposure to some risks, to predict other risks, to draw on material reserves to cushion
periods of difficulty, and to connect with social networks with a larger number of strong and weak
ties to sources of help.
Differential health outcome

The effects of these three sets of social influences are then seen in the plethora of reports of
gradients in the incidence and burden of ill health. The clustering of risks is a structural influence
leading to greater incidence of disease. The relative difficulties of accessing health care compound
this effect by ensuring that disease presents to the health service later or not at all.
Differential consequences
All of this then impacts on the length and quality of life and of the persons potential for functioning in society. Loss of earnings, loss of schooling, and catastrophic costs of health care, can lead to
a downward spiral of negative influences on the individual and the household.
A shift in emphasis
Taking note of the burden of NCD, in aggregate terms and in the relative distribution across
societies, it is valid to ask a classic question: So what? The NCD epidemic is large and growing,
and the burden is disproportionately affecting socially disadvantaged groups. Beyond serving as
a frame for research and occupational therapy for epidemiologists [14], what are the lessons that
can be drawn for action? Most importantly, what lessons can be drawn that may be relevant to the
health sector, within which most cancer control workers are located?
The World Health Report of 2008 [20] proposes that four shifts in emphasis (four reforms)
are needed and they would be well-suited for consideration by the cancer control community:
1 Reforms in favour of promoting equity: the thrust here is to move to universal coverage
and social health protection. A major barrier to equity is the barrier to access at least a basic
package of primary preventive, curative, and palliative services at community level without
incurring catastrophic financial consequences.
2 Reforms in favour of people-centred care: focusing health care at the primary level means
focusing on the needs and expectations of people. This includes the delivery of care not
simply as a set of discrete, evidence-based interventions, but more comprehensively as
a coordinated service provided by a multidisciplinary team that is close to the community,
with care that is organized around a persons needs rather than the separate stages of a given
disease.
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3 Reforms in favour of more reliable health systems: this is a management reform that steers away
from totally centralized planning of health care yet not completely towards a laissez-faire
model where health care access is totally market driven. The leadership of the health sector
needs to be felt in ensuring that a coherent, evidence-based, socially just package of primary
prevention and care is accessible by all through whatever public and private system is
appropriate for the country.
4 Reforms in policy: this line of action requires the health sector and health advocates to take on
the task of providing for the health of communities by addressing the policy environment, by
linking primary care and public health activities, and by advocating for broader intersectoral
actions ranging from school curricula through to a countrys trade policies.
The rest of this chapter provides an illustration of the ways in which these models and reforms
apply in the context of the cancer control movement as it makes its own journey from:
A curative approach, to the a more risk-oriented public health and preventive approach
A narrow cancer focus, to an integrated NCD focus based on a recognition of common risks
A risk-oriented approach, to a wider social justice and equity-oriented approach
A health sector-orientation to a broader involvement and advocacy for wider social change
Systems that improve health

The adoption of unhealthy behaviours by large segments of populations, resulting in the observed
pandemic of CVD, cancer, COPD, diabetes and other common NCD is often argued to be a wellinformed decision taken autonomously by individual members of the population. This plausible
micro-perspective is being increasingly challenged from the public health point of view. The
public health macro-standpoint claims that man-made socio-economic, psycho-social, cultural,
political, and physical environments in which people live, work, and play limit the liberty of
individuals to exercise true freedom in making informed behavioural choices and expose entire
populations to multiple, powerful health-harming influences. From this perspective, people with
NCD are seen as numerous, unlucky members of the society that, together with their families,
bear direct, serious, often deadly consequences of the adoption of unhealthy social and behavioural norms by entire populations.
Focus on sick individuals and on those at very high risk of developing NCD, a prevailing strategy of contemporary health systems, results in prioritizing actions that address consequences
rather than their underlying causes. This approach is inconsistent with public health paradigm
based on principles of health promotion and population-based prevention. Since unhealthy
human behaviours stem from specific milieu their modification through policy, social, economic,
and environmental interventions is less expensive and more permanent than individual-level
lifestyle change.
Efforts of health authorities to prevent and control NCD are often centred on identifying
and managing individuals with a particular priority disease (e.g. cancer, CVD, COPD, etc.) or
particular risk factor (tobacco consumption, high blood pressure, high cholesterol level, etc.).
The coverage, hence public health impact, of applying such vertical strategies is limited. Various
vertical NCD programmes compete for scarce health resources. They are heavily biased towards
management of cases identified, despite all efforts, at rather advanced stage of disease, when effectiveness of intervention is limited even with engagement of highly specialized health workforce
and sophisticated medical technology at high, hardly affordable cost. These programmes tend to
be poorly coordinated, strongly entrenched within health services,and dominated by medical
super-specialists and clinical researchers.
SYSTEMS THAT IMPROVE HEALTH
WHOs Framework Convention on Tobacco Control (FCTC) and the Global Strategy on Diet,
Physical Activity and Health (DPAS) aim to guide integrated, multisectoral efforts to implement
evidence-based interventions on common modifiable NCD risk factors and their determinants
[21,22]. Involvement of health and non-health, public and private, stakeholders as well as civil
society groups and international partners is seen as a basic prerequisite to generate efficiencies,
minimize health inequities, and reduce disease burden.
The concept of multisectoral, multidisciplinary, and multilevel collaboration for integrated
prevention and control of NCD is not new and is broadly accepted by the public health community. Application of integrated and well-coordinated approaches is expected to yield public health
and economic benefits through avoidance of duplicative actions, minimizing rivalry for territories, pooling existing resources, improving chances to mobilize more resources, maximizing
outcomes of high level advocacy, and identifying and addressing grey and border areas.
While establishing functional collaborative interfaces and modalities to involve other
than health sectors in debate and coordinated action for population-based prevention of
NCD, it is equally important to re-examine and strengthen intrasectoral (within health sector)
collaboration. It is imperative to strengthen interaction between vertical disease or risk factorspecific NCD projects and programmes especially around advocacy, health policy development,
surveillance, community and primary health care-based interventions, research and monitoring,
and evaluation. Good coordination between vertical NCD programmes and with other healthrelated programmes such as health promotion, environmental and occupational health, nutrition, health information systems, child and adolescent health, reproductive health, immunization,
etc. may result in better positioning of NCD prevention and control priorities within overall
national health development plans.
As socio-economic, cultural, political, and other determinants of NCD reside largely outside
the conventionally understood domain of health systems, the effective and efficient action to
prevent these diseases requires a whole of government approach involving health and non-health
sectors.
Collaboration with virtually all governmental sectors may bring efficiencies and smooth the
progress in integrating the prevention of chronic diseases into an overall national socio-economic
development policy/plan/agenda. The target sectors include amongst others finance, agriculture,
food and other industry, trade and commerce, information and media, education, social welfare,
transportation, infrastructure, sports and recreation, justice and law enforcement, internal affairs,
and defence. In the process of establishing collaborative platforms, synergies in mandates and
goals of potential partners need to be identified, existing legal and structural frames and mechanisms examined, and the capacity and capability of workforces to act together in addressing
health objectives enhanced.
NCD prevention and control programmes require coordination with stakeholders beyond the
government. Stakeholders from private sector and civil society add human and financial resources
and bring valuable perspectives to the debate on priorities and the best ways to address them.
International organizations and national civil society groups such as non-governmental organizations, professional and research community associations, and philanthropies are instrumental in
the wide dissemination of information and in influencing behaviour of individuals. They lead
grass-roots mobilization, organize campaigns and events that raise awareness, mobilize resources,
plan and implement community-based activities, and contribute to improving health care
delivery.
The private sector, such as the food industry and retailers, advertising and recreation businesses, pharmaceutical companies, the media, and others have an important role in promoting
healthy behaviour. Assuming public health accountability by partners from the private sector,
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through developing and adopting health-enhancing self-regulation and other actions, could
bring considerable health benefits to the people.
Recent reviews of evidence on cost-effective interventions for prevention and control of major
NCD are available elsewhere [1,23,24]. It is beyond the scope of this chapter to systematically
discuss the possible role of each sector and partner in implementing these interventions. Some
examples related to application of regulatory, fiscal, and marketing mechanisms given hereunder
illustrate the wide array of possible collaborative actions.
Legislative measures are more cost-effective than voluntary measures due to greater compliance
[24]. At international level, the WHO FCTC is the only existing legal instrument specifically
designed to target an important cause of chronic diseases [21]. This multilateral treaty, with more
than 150 parties, presents a blueprint for countries to reduce both the supply and demand for
tobacco. The International Health Regulations, which came into force in 2007, aim to help the
international community prevent and respond to acute public health risks, but do not address
health risks related to chronic diseases [25]. At the national level it is desirable to have the existing
legislative and regulatory acts reviewed from the perspective of their impact on molding unhealthy
environments. It is also important to examine and address the common problem of poor enforcement of existing tobacco, alcohol, and food-related legislation.
Taxation and other fiscal mechanisms are considered an effective tool in reducing demand
and consumption of manufactured cigarettes, alcohol, and certain unhealthy food products. The
significant reduction in coronary heart disease observed in Poland between 1991 and 2002 came
from fiscal policy to reduce subsidies for butter and lard, which switched consumption from
saturated to polyunsaturated fats [26]. Increasing the price of tobacco through higher taxes is the
single most effective way to decrease consumption [27]. The health effects of fiscal policies aimed
at improving health need to be closely monitored in order to put in place early warning mechanisms. For example in India, where handmade bidis and gutka taxed at a lower rate than machinemade tobacco products dominate the tobacco market, increase of taxes for manufactured
cigarettes without concomitant taxation of other tobacco products led smokers to further shift to
cheaper alternatives.
As developed countries have implemented successful tobacco control policies that led to
declines in tobacco use, the tobacco industry, the main vector of the global tobacco epidemic, has
shifted its attention to markets in developing countries. Its efforts to depict itself as a socially
responsible partner via schemes aimed at improving labour practices and public philanthropy are
clearly driven by corporate self-interest rather than social responsibility [28].
As a result of trade liberalization, diets throughout the world became increasingly similar.
Large multinational companies, through global marketing of food products, control much of
what people eat. It is not uncommon that contemporary populations consume more Coca Cola
than milk [29]. The overarching aim of the food industry is to increase demand and sales of their
products and generate profits. The convenience and availability of energy-dense foods offered
globally has contributed to the epidemics of obesity [30]. In this context the food industry is
taking progressive efforts to depict itself as a responsible stakeholder in multisectoral actions to
prevent and control NCD.
In support of the WHO Global Strategy on Diet, Physical Activity, and Health (DPAS)
the major international food and non-alcoholic beverage companies pledged to take steps to
re-formulate existing products (e.g. altering composition by reducing salt and trans-fats), develop
innovations that offer healthier options to consumers, and provide more and clearer information
about the nutritional composition of products. They promised also to adopt voluntary measures
on the marketing and advertising of food and beverages and promote healthier lifestyle in the
workplace. These self-regulation actions seem to have so far rather limited coverage and scope.
HEALTH SECTOR RESPONSES TO NON-COMMUNICABLE DISEASES
Moreover, they do not involve small- and middle-sized food companies. The impact of these
declarations is still to be demonstrated.
In view of pandemics of NCD, issues related to the commercial promotion of foods high
in saturated fat, trans-fatty acids, sugars and salt, and of non-alcoholic beverages are receiving
growing attention. Various civil society groups have proposed the development of an international code on marketing of food and non-alcoholic beverages to children. The WHO is in
process of developing a set of recommendations in this regard.
The underlying economic, psycho-social, cultural, and political determinants of NCD, such as
those related to rapid globalization and trade liberalization, uncontrolled urbanization, improved
communication and technology, and population ageing are increasingly realized. With the
imperative of applying a holistic, multisectoral, multidisciplinary, and multilevel perspective to
address NCD, their risk factors and various determinants are well appreciated.
The proposed mechanisms to enable collaborative intersectoral action for health include joint
planning and implementation of programmes, conducting joint situational analysis, generation
of evidence, and assessing the outcomes and impact of interventions. It is proposed that the
health sector should take the lead in establishing coordinating mechanisms, setting coordinating
bodies and institutions, empowering the partners, and establishing channels for sharing and
using information. However, there is limited evidence available demonstrating the effectiveness
of structural interventions implemented by health and other sectors and directed at the social
determinants of NCD [23]. The documentation of successful operationalization of integrated,
multisectoral approaches and the empirical evidence on their feasibility and efficiency is still to be
produced.
Health sector responses to non-communicable diseases

From a health systems perspective, interventions required for chronic disease management
(control) and those recommended for preventing them have a large number of commonalities,
even if there are some important differences. As we will argue in this section, both share the need
to re-orient the acute-care practice approach to provide longitudinal care in a planned, proactive,
and patient-oriented fashion [31].
Access to affordable and effective primary health care by whole populations is essential for the
prevention and control of NCD. The concept and need of universally accessible and affordable
primary health care was postulated in the 1978 Alma-Ata Declaration [32]. There is now good
evidence that improved health outcomes, reduced health disparities, and lower costs of health
care are related to health systems with well-functioning primary health care services [33].
Preventive interventions administered through the primary health care system together with
evidence-based early treatment of NCD can often delay or replace more expensive specialist and
tertiary care-based treatment of advanced illness and complications.
Such primary health care services for prevention and control of NCD need to be organized so
that many essential interventions are delivered by trained non-physician health care workers.
This certainly should occur under the supervision of a physician-led system but the emphasis
is that a large spectrum of prevention and control activities can be performed by trained nonphysician health workers [34]. This is necessary for the efficient use of all the resources in a developing country, including the health care personnel resources, especially in view of the increasing
rates of chronic diseases and their risk factors. Interestingly, such urgency to re-orient the chronic
disease health care approach is being increasingly realized in highly resourced settings [35].
Historically, the gains in life-expectancy achieved through reducing childhood mortality from
infectious diseases were based on the efforts of non-physician health care workers administering
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vaccinations and oral rehydration therapy. Hence the traditional physician-based treatment
model in primary and secondary health care needs to be re-focused to addressing secondary
and tertiary medical care of NCD in a referral-based system. Furthermore, the strengths of nonphysician primary health care professionals in recognizing and maintaining health, and detecting
and treating individuals at risk of or suffering from disease, need to be expanded from the traditional areas of ante-natal care, childbirth, and infant welfare to deal with NCD. This is already
happening for womens health in some developing countries, where nurses and other trained
non-medical health care workers help maintain the health of women and screen them for breast
and cervical cancer. In India this role has been further developed in demonstration projects for
the visual detection and immediate treatment of cervical dysplasia. Primary health care services
can and should be provided by physicians in settings where patients with established NCD risk
factors and NCD are being treated and supervised.
The key principles of universal primary health care envisioned in the Alma-Ata Declaration
involved universal coverage of basic services such as education on methods of preventing and
controlling common health problems; promotion of food security and healthy diets; basic sanitation; control of locally endemic diseases through appropriate treatment of common diseases and
injuries; and provision of essential drugs. These are all essential to NCD prevention and control
and point towards the need for an integrated multisectoral approach. In this context, the prime
delivery of health services needs to change its focus from larger hospitals towards strengthening
community-based services and promoting more balanced and cost-effective preventive and curative programmes. The reorientation of health services should be done by an intersectoral approach
including the education, agricultural, non-governmental, and even religious sector where appropriate to extend service delivery. The community should be involved in planning and implementing its own health care services with non-physician health workers being trained under health
sector leadership. For example, reducing harm from alcohol abuse, which is associated with
cancers of the gastrointestinal system, breast cancer, hypertension, cardiovascular disease, and
dementia, requires government and community action in many areas. These could include, for
example, cultural change on the acceptability of drinking alcohol in public places, controls on
excessive consumption in commercial settings through regulation, banning alcohol advertising,
and school- and community-based education about alcohol abuse, changes in agricultural practices which otherwise would increase the availability of alcohol, taxation to reduce discretionary
alcohol purchases, and restriction on sales to minors. Non-medical organizations and professionals contribute via counselling and providing other alcohol cessation services, and police action
is important in a number of settings including drinking and driving. The health care sector has
a number of roles in primary and secondary prevention through detection and management
of problem drinking, early detection of disease caused by alcohol abuse, and management of
patients with established alcohol-related NCD. Much of this is happening in some developed
countries, and illustrates the cross-sectoral actions and responsibilities which characterize efforts
to control NCD.
In summary, primary health care systems in many developing countries have to date made
most progress in controlling infectious diseases, injuries, and maternal/child health issues, but
have failed in providing continuing chronic disease prevention and care, together with the reliable
system of accessible medical records needed for NCD prevention and control. Furthermore,
many health care seekers in low and middle income countries bypass primary health care services
and directly access secondary and tertiary centres because of the lack of competent staff and
essential medicines at the local care level [36]. To increase the trust of community members in the
benefits of primary health care for NCD prevention and control a number of steps need to be
pursued: new and existing health care workers need to be up-skilled and provided with the tools
HEALTH SECTOR RESPONSES TO NON-COMMUNICABLE DISEASES
to detect and manage NCD, including the use of proven low-cost pharmacological treatments
where appropriate [37]. The training needs to include the maintenance of long-term follow-up
and enhancement of treatment adherence assisted by simple medical record systems. This needs
to be augmented by a transparent guideline-driven system of referral to hospitals for specialist
care for those in need.
These observations also apply to a varying extent to general practitioner (GP)/physician-based
primary health care attempts to detect and manage NCD risk factors and NCD in developed
countries. In most countries this is opportunistic, and a population-based register of the NCD
risk factor status is an exception. Songjiang, one of nine suburbs of Shanghai, with a resident
population of 500,579 in 2005, is one notable exception (R. Burton, personal observations). The
NCD risk factor and NCD management status of this population, 17 per cent of whom were over
the age of 60 years in 2005, has been captured on an electronic health archives system linked to
the community health care centres and hospitals. This ensures that population-based treatment
and follow-up occurs. For example in 2005, of the 2963 cancer patients registered, 98 per cent
were being followed up.
The role of self-care or self-management in the control of NCD is also regarded as critical, and
an essential component to achieve long term beneficial change in NCD risk factor exposure and
sustainable adherence to ongoing therapy [38,39]. As discussed by Clark and others [40,41] selfmanagement or self-care in the context of chronic diseases involves a set of skilled behaviours
to manage ones illness including engaging in activities that promote health, build physiologic
reserve, and prevent adverse sequelae; interacting with health care providers and adhering to
recommended treatment protocols; monitoring physical and emotional states and making appropriate management decisions on the basis of the results of self-monitoring; and managing the
effects of illness on to function in important roles and on emotions, self-esteem, and relationships
with others. In the context of cancer, relevant examples would be support for and administration
of therapy to cancer sufferers in their community, where the patient and their immediate carers
would learn to cope better with the side effects of treatment and manage pain relief in the home.
The palliative care of cancer patients is largely community-based, but patients should have ongoing access to more specialized palliative care services as needed. The augmentation and partial
reorientation of community palliative care services for HIV/AIDS so they can fulfil this role for
cancer patients has been mentioned already, and illustrates the need to discover the breadth
of community services available for chronic disease management before considering developing
a new service.
We therefore prefer a more ecological view, which emphasizes how the individual and his or
her self-care ability is related and dependent on the services and support they can access from
carers and their social environment of family, friends, workplaces, community members and
organizations, and the physical and policy environment represented by their neighbourhoods,
communities, and governments as well as global issues. The ecological contextual view of chronic
disease care and prevention (Figure 21.3) illustrates the different levels of influence on the individual and what aspects and functions in chronic disease care and prevention these levels assume,
and the interplay of these levels that constrain and define available care.
This recognition of spheres of influence from the global context down to individuals choices
and behaviour also reflects the previously introduced model of causation (Figure 21.2). It is therefore apparent that even the best-resourced interventions directed at only one level cannot achieve
the necessary long-term sustainable changes needed for chronic disease control, but multilevel
and comprehensive interventions are required. For example a review of various self-management
interventions for diabetes control evaluating the success of different strategies directed solely
at the individual could only identify the duration of the intervention as a significant predictor of
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412
Family (extended)
Community
health care
services
and
resources
Patient
or
person with
NCD risk
Non-health
care
community
resources
Fig. 21.3 Circles of influence in the prevention and management of NCD.
programmes success, as none of them achieved long-term sustained benefits much beyond their
timeline [42]. This illustrates that beneficial change can be achieved through focal intervention,
but may not be sustained.
Although the patient with chronic disease or the person at risk for such disease is at the
centre of our view, Figure 21.3 places next to the patient the most immediately accessible resources
needed for care and prevention, and to support his or her ability to follow through with selfcare. These are family members and volunteer carers; health centres and community health care
resources; and the non-health care resources of the community impacting on chronic disease
prevention (e.g. access to health information, healthy nutrition, clean environment and safe environments for undertaking physical activity). The next level of resources, specialist resources, and
care facilities, refers to secondary and tertiary care for chronic disease prevention and control.
Resource limitations in many countries make it mandatory that this level does not assume firstline involvement in chronic disease prevention and control. The disease specialist resources are
in turn embedded in the national and regional policy and resource environment which can determine funding, access, pricing, and other resource distribution relevant factors. These in turn are
surrounded by an even more remote level of influence, the global environment [43], which can
set international guidelines and realities impacting both on the risk for chronic disease (e.g. international tobacco sales) and prevention and control of this risk factor and the NCD it causes, for
example, the WHO Framework on Tobacco Control adopted by member countries and shown at
the next circle of Figure 21.3.
ACKNOWLEDGEMENT
This comprehensive view of chronic disease prevention and control also has implications
for workforce and infrastructure planning. Without long-term commitments and supportive
infrastructure, both within and outside the immediate health sector, there is little chance that
effective systems can be created on a sustainable basis [44].
Conclusion
This chapter has argued strongly for an integrated approach to the prevention and control of
NCD, where this offers advantages over a disease-specific approach. This is most obvious at the
primordial and primary levels of prevention of NCD, which are dominated by government and
NGO actions from sectors other than health. The health care sector does have crucial roles in
advising and supporting government legislation and regulations which prevent NCD, and actively
engaging in primary prevention actions as appropriate and necessary. These will, with the exception of immunization against infectious cancers of the liver and cervix which could be integrated
into the childhood immunization system for infectious diseases, generally address the common
behavioural risk factors for the major NCD. In early detection and screening for NCD the screening technologies will be specialized to the NCD; however, the systems for population education,
recruitment of people, registration for follow-up, rescreening and referral for diagnostic tests and
specialist management are the same for all NCD. The health care sector should advocate for
an integrated approach where this is relevant. A population-based NCD risk factor register which
would achieve this for early diagnosis/screening of particular NCD where early treatment gives
better outcomes is possible, as Shanghai has shown. However, to date, a silo approach has dominated in most developing countries with Australia, for example, having separate cervical, breast,
and colon cancer screening registers and no population registration of hypertension, obesity,
or prediabetes/diabetes.
In contrast there are clearly areas of NCD prevention and control which demand specialized
disease-specific approaches. Radiotherapy, which is mainly used with curative intent in developed countries, is the mainstay of hospital-based palliation in developing countries where
most patients present with incurable disease. Although highly specialized, radiation oncologists
should have a broad knowledge of cancer prevention and control, and as the first cancer specialists in some developing countries advocate to governments for cancer control actions that cover
the spectrum from prevention to palliation, and advocate for integration into NCD control
generally where this is appropriate. This concept is at the heart of the International Atomic
Energy Agency (IAEA) Programme of Action for Cancer Therapy (PACT), which began in 2005
[45]. The balance between integrated and specific actions to control NCD will vary over time with
a countrys level of resources, system of government, strength of the health care and other relevant sectors, and changes in knowledge and technologies for the control of NCD. A countrys
Chronic Disease Control Strategy should be developed taking account of this. Pre-existing cancer
and other NCD control plans should be acknowledged and revised in the light of this overall
strategic approach; but separate NCD control plans will still be necessary for actions to control
a particular NCD, for example immunization against infectious cancers and development of
radiotherapy services.
Acknowledgement
We thank Dr Gauden Galea, MD, Coordinator, Primary Health Care, Health Promotion and
Priority Public Health Conditions, World Health Organization, Geneva, Switzerland, for valuable
input into this chapter.
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Chapter 22
Cancer control in developing countries

Ian Magrath1
The World Health Organization (WHO) recently projected that by approximately 2010, cancer
would overtake ischemic heart disease as the leading cause of death in the world (Figure 22.1)
[1,2]. Between 2005 (when some 7.6 million people died from cancer, accounting for 13 per cent
of global deaths) and 2015, it is anticipated that 84 million people will die of cancer. In 2005,
approximately 70 per cent of cancer deaths occurred in low and middle income countries where,
although cancer has a lower incidence, survival rates are also much lower, largely because of
delays in diagnosis leading to presentation with advanced disease. Because much of the cost
of care must be borne out-of-pocket, and because of the low gross domestic product (GDP) of
which only a few per cent is assigned to the provision of health services, poor patients often
receive incomplete or sub-optimal therapy in overcrowded and unhygienic wards or none at all.
Those with incurable disease, or without financial support, are frequently sent home to die
without even the comfort of palliative care. Many patients (uncounted and uncountable) never
reach a centre capable of providing treatment. This existing, though largely silent, catastrophe will
soon become a crisis, since the global cancer burden is increasing rapidly in the developing
countries, where populations continue to expand as communicable diseases are better controlled,
resulting in longer life spans, ageing populations, and, consequently, higher cancer incidence.
Unfortunately, death from infection is all too often replaced (or added to) by death from the noncommunicable diseases (NCDs) caused by smoking or over-consumption of a diet lacking in
fruits and vegetables and an increasingly sedentary life style; although in the low income
countries, chronic infection is still an important cause of cancer. Tobacco and diet together
account for up to 60 per cent of cancer in high income countries, but, at the present time, a much
lower proportion in low and middle income countries, although they will take an increasing toll on
the emerging middle class in developing countries, particularly in those undergoing rapid development, such as India and China. Even if the present constantly increasing smoking rates in developing countries are slowed or even reversed, a sufficient number of individuals have been smoking
long enough to make an increase in tobacco-related cancers in the coming years inevitable [35].
The increase in cancer rates in developing countries will not be small; the International Agency for
Research on Cancer (IARC) predicts that by 2030 there could be 27 million new cases and 17 million
cancer deaths per year an extra 10 million deaths compared to 2005 [6].
This gloomy spectacle is not a reason for inaction. The reverse is the case. The high mortality
rate from cancer in developing countries will improve only gradually, and determined largely
by the resources available or identified, and efforts made to educate both health professionals
and the public. While national cancer control planning based on an understanding of the
problems and needs is essential, such plans will have no effect unless translated into action.
1
Ian T. Magrath, DSc (Med), FRCP, FRCPath, President, International Network for Cancer Treatment and
Research (INCTR), Brussels, Belgium.
CANCER CONTROL IN DEVELOPING COUNTRIES
12
Cancers
Projected global deaths (millions)
418
Ischaemic
heart disease
10
8
Stroke
HIV/AIDS
6
4
Tuberculosis
Other infectious
diseases
Malaria
Road traffic
accidents
2
0
2000
2020
2010
2030
Year
Fig. 22.1 Projected global deaths for selected causes of death, 20022030.
Large declines in mortality are projected to occur between 2002 and 2030 for all of the principal
communicable, maternal, perinatal and nutritional causes, with the exception of HIV/AIDS.
Although age-specific death rates for most non-communicable diseases are projected to decline,
the ageing of the global population will result in significant increases in the total number of deaths
caused by most non-communicable diseases over the next 30 years. Overall, non-communicable
conditions will account for almost 70 per cent of all deaths in 2030 under the baseline scenario.
Mortality rank order depends, of course, on how diseases are grouped together. If each cancer
were considered a separate disease, ischaemic heart disease would remain the leading cause of
death for the foreseeable future.
From: WHO Statistical Highlights 2007 [2].
Professional education should ideally be provided in a way that leads to immediate benefits to
those who suffer from or could develop cancer, for example, through clinical studies that are
relevant to the countries in which they are conducted, rather than being done for the economic
benefit of technologically advanced countries. The problem of migration of health workers
demands attention, and professional education, however delivered, must be adapted to the very
different circumstances that apply in developing countries. Public education also needs different
approaches in different cultures, where there may not only be a lack of knowledge, but incorrect
beliefs about cancer. In such circumstances, methods need to be found to correct, or unlearn,
messages that pervade the society. Solutions are most likely to be found through close collaboration between local health professionals and a variety of external organizations, institutions, and
individuals that can offer specialized knowledge and training in appropriate skills.
Differences in the incidence and pattern of cancer worldwide

The incidence of cancer in less developed countries is several times lower than that in more
developed countries (Table 22.1), even using rates adjusted to the age structure of the world
population, which under-represent the absolute differences in incidence because of the younger
age distribution in less developed countries. Age-adjusted data do, however, indicate what will
happen in the coming years as the epidemiological transition from communicable to noncommunicable diseases progresses, and populations age due to decreasing fertility rates and
DIFFERENCES IN THE INCIDENCE AND PATTERN OF CANCER WORLDWIDE
Table 22.1 Incidence rate of cancer (all sites but skin) per 100,000 in selected global regions
Males
Incidence
Mortality
Females
Incidence
Mortality
Crude
ASR
Crude
ASR
Crude
ASR
Crude
ASR
North America
530
398
210
153
455
305
186
112
Western Europe
526
326
295
174
429
245
225
106
Middle Africa
78
142
66
121
76
122
62
99
South Central Asia
76
106
55
78
89
110
55
70
From: Globocan 2002 [1]. ASR = age-standardized rate (using World standard population).
increasing longevity. But already, the numbers of new cases and of deaths are higher in developing
countries because together, they account for approximately 85 per cent of the worlds population
(Figure 22.2). Smoking and dietary factors are less important predisposing diseases and infectious
diseases correspondingly more so in countries lower on the socio-economic ladder. In the poorest
countries in equatorial Africa an infectious antecedent is likely to account for as much as 40 to
50 per cent of all cancer cases (compared to 8 per cent in high income countries) demonstrating,
remarkably, that if infection could be controlled in the absence of the introduction and expansion
of risk factors currently prevalent in the highest income countries, the cancer incidence rate could
decrease by almost half in the lowest income countries! Such a scenario is highly unlikely given
present trends, but does indicate the need for the development of new programmes in cancer
control even in the poorest countries, while continuing to address the major incapacity caused by
chronic infections and intermittent epidemics.
Unfortunately, until very recently, cancer was not on the agenda of the major international
agencies that deal with health cancer, and NCDs in general, were not, for example, included in
the Millennium Development Goals. Yet NCDs accounted for 60 per cent of global deaths in 2005
(35 million), with 80 per cent in low and middle income countries, and are projected to increase
by a further 17 per cent in the next decade [7]. Such summary statistics, although important in
the context of global decision making, are of limited use in developing national cancer control
strategies, since variation in cancer patterns and resources can vary markedly from country to
500
3500
3000
400
2500
300
2000
200
1500
1000
100
500
0
0
Males
Less developed
Females
More developed
Per 100,000 per annum
Males
Less developed
Females
More developed
Thousands per annum
Fig. 22.2 Incidence rates and incident cases in less and more developed countries. Although the
incidence rates (crude) per annum are lower, the absolute number of cancer cases per year is higher
in developing countries because most people live in low and middle income countries.
Source: Data from Globocan 2002 [1].
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420
country and even among different regions in the same country. The global distribution of cancers
by type is shown in Figure 22.3.
The average age of patients with cancer in developing countries is much lower than in high
income countries, and cancers in children, adolescents, and young adults comprise a much higher
fraction of all cancers. This is in part due to the lower average age of the population and shorter
duration of exposure to risk factors, such as smoking and potentially dietary factors, but in some
Male
Female
Lung
Stomach
Liver
Breast
Oesophagus
Cervix uteri
Colon and rectum
Prostate
Oral cavity
Leukaemia
30 25 20 15 10
Incidence
Mortality
10 15 20 25 30
GLOBOCAN 2002
Male
Female
Lung
Breast
Colon and rectum
Prostate
Stomach
Bladder
Non-Hodgkin lymphoma
Melanoma of skin
Kidney etc.
Leukaemia
Incidence
Mortality
80
60
40
20
20
40
60
80
GLOBOCAN 2002
Fig. 22.3 Incidence and mortality rates (age-adjusted to the world population) per 100,000 of the
top ten cancers in less (upper graph) and more developed countries (lower graph). Note that the
horizontal scales are different.
RESOURCE LIMITATIONS IN DEVELOPING COUNTRIES
Breast: Incidence
500.0
More developed countries
Rate (per 100,000)
400.0
Less developed countries

Tanzania
300.0
United States of America

200.0
Japan
100.0
GLOBOCAN 2002
0.0
25
35
45
55
65
Age
Fig. 22.4 Age-specific incidence rates for breast cancer in selected countries.
cancers this is an inadequate explanation since age-specific incidence curves indicate a lower
incidence in older individuals. For example, the incidence of breast cancer increases throughout
life in most high income countries, but peaks in incidence between the ages of 40 and 50 years in
lower and middle income countries, as well as in Japan (Figure 22.4), suggesting differences in
risk factors for pre- and post-menopausal breast cancer [1]. This is entirely consistent with the
increasing proportion of estrogen-positive breast cancers with age.
The lower cancer risks do not mean that cancer is not an important health problem in the lower
income countries. Indeed, unless cancer control measures are greatly augmented, the burden of
cancer will create ever greater stress to health systems that are already overwhelmed, and as GDP
increases, it will be necessary to ensure that health service improvements do not lag behind other
aspects of development. This is important both from the perspective of human rights, and also
from that of development, for the productivity of an unhealthy population can never equal that
of a healthy population.
Resource limitations in developing countries

According to the World Bank, approximately 1.3 billion people live on less than a dollar a day,
and almost half the worlds population lives on less than 2 dollars a day [8]. While these numbers
are somewhat arbitrary, as is the definition of poverty, they clearly indicate that the bulk of
humanity is extremely poor. More than 75 per cent of the worlds population (4.7 billion people)
live in countries classified as low or low-middle income countries by the World Bank, that is, with
an annual income of less than $3,705 in 2007 (Table 22.2). This contrasts with an average annual
income of $39,177 for the 30 OECD (Organization for Economic Cooperation and Development)
countries. Poverty at the level of individuals is associated with extremely limited public resources,
such that even countries that give health and education a high priority have a drastically limited
ability to provide for the needs of their populations. At the turn of the millennium, for example,
421
Table 22.2 World Bank Definitions of income categories (2007 Gross National Product per capita)
in countries at different levels of socio-economic development, and population numbers. Note that
least developed is also included in the low income category
Category
GNP per capita
Population size
Least developed
less than $496
800 million
Low income
less than $935
1.3 billion
Lower middle income
$936$3,705
3.4 billion
Upper middle income
$3,706$11,455
823 million
High income
$11,456 or more
1 billion
From: [8].
a billion people were unable to read or sign their name. According to UNICEF, some 11 million
children die each year as a direct consequence of poverty, and the United Nations Development
Program states that a million children a year die for want of clean water and adequate sanitation
[8]. Poor health (malnutrition, anaemia, and common infectious diseases) also causes frequent
interruptions in education, and reduces the ability to learn. Many children never go to school
(which is rarely free), or have very little education. The lack of even a basic education condemns
most to a life of perpetual poverty and potential catastrophe while markedly restricting the pool of
young people who can undergo higher education and hence the number of trained professionals
in all sectors of the economy. In this setting, natural disasters or inter-ethnic conflicts precipitate
serious added health problems resulting from violence, epidemics, starvation, displacement from
home, and lack of access to clean water, food, and medicine.
Clearly, difficult decisions must be made by governments regarding priorities for their limited
budgets. In the poorer countries health expenditure is usually just a few per cent of total government
spending in absolute terms, sometimes hundreds of times less than is spent per capita in high
income countries (Figure 22.5). Health workforces are correspondingly small and unable to
cope with the burden of disease. The WHO, for example, reports that sub-Saharan Africa, with
$12
$2489
$5274
$3039
1000
900
800
700
600
500
400
300
200
al
i
ep
a
Ye l
m
Ta en
nz
an
ia
In
di
Vi
a
et
n
Co am
lo
m
b
M ia
ex
Sw ico
ed
en
Lo
U
SA
w
M
I
id nco
dl
m
e
e
H Inco
ig
m
h
In e
co
m
e
100
0
422
Figure 22.5 Health expenditure per capita (current US dollars) in selected countries.
Source: Data from World Development Indicators, 2007.
RESOURCE LIMITATIONS IN DEVELOPING COUNTRIES
9.37
10.24
4
3.5
3
2.5
2
1.5
1
0.5
Doctors
SA
U
bi
a
ex
ic
Sw o
ed
en
om
ol
na
di
et
In
ia
Vi
en
Ta
n
za
n
al
Ye
ep
N
al
Nurses
Figure 22.6 Number of physicians and nurses per 1000 in selected countries. This figure emphasizes
the enormous differences between the richest and poorest countries.
Source: Data from World Health Report 2006 [45].
11 per cent of the worlds population and 25 per cent of the global burden of disease, accounts
for less than 1 per cent of global health expenditure. In contrast, the Americas, with 14 per cent
of the worlds population and 10 per cent of the global burden of disease, account for more than
50 per cent of the global health expenditure [8]. Comparisons of the numbers of doctors and
nurses per 1000 of the population in selected countries are shown in Figure 22.6. Some populations in low income countries are considerably worse off than even these figures suggest, since the
inadequate workforces are also mal-distributed (rural regions are particularly poorly provided
for) and health services are poorly structured and managed. Some countries have fewer nurses
than doctors such that nursing tasks, to the extent possible, must be performed by family members, or not at all an unthinkable situation in high income countries. Health care providers
are generally swamped with many more patients than they can adequately deal with; there is no
time for continuing education (which is rarely a requirement for retaining a license to practice),
except for a privileged few; and there is minimal incentive, knowledge or infrastructure for the
collection of data relevant to measuring the impact of interventions in the local, resource-limited,
context.
Resource limitations in the context of cancer

Although there are cancer registries in developing countries, much of the available data is institutional rather than population-based and of variable quality. Poorly organized health services and
inadequate training of health workers often lead to delays in diagnosis, misdiagnosis, loss of clinical samples, inadequate investigations, poor record keeping and lack of communication within
the health service, poor supportive care, and limited or no patient follow up. Professional education often leaves much to be desired without continuing medical education, most senior health
professionals are out-of-date and their large clinical workloads leave little time for teaching.
Career choices are often governed more by the anticipated income than by interest or talent in a
particular area of medicine. Too few doctors are likely to translate into even greater deficiencies
in specialists. In many countries many specialties are not represented at all, so the vast majority of
cancer patients who reach secondary or tertiary centres are cared for by non-cancer specialists.
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The combination of factors that leads to advanced disease at presentation also leads to a fatalistic
attitude to cancer, and hence an assumption that cancer is not important to diagnose or assess
fully. Of course, there is much variation: some countries in the upper middle income category
provide care and professional education that, at least in the best centres, can be equal or close to the
level of high income countries, but in many rural regions, medical facilities are extremely limited.
The inability to pay for care is not simply due to the cost of treatment, but also to the loss of income
that occurs while away from home. Because in such circumstances the entire family will suffer, an
unknown fraction of patients may never receive the care they need even palliative care.
Resources for each of the three major modalities of cancer therapy are severely limited in low
and lower middle income countries. Surgical oncologists, or even general surgeons with expertise
in cancer surgery, are in short supply and like all other human, financial, and material resources,
are more likely to be available in urban rather than rural regions. Radiation therapy, which
evolved early in the twentieth century in Europe, has still not spread to all countries in the world,
due both to the capital cost of equipment and the lack of radiation oncologists, medical physicists,
and radiotherapy technicians. According to the International Atomic Energy Agency, half of the
worlds countries have 85 per cent of all radiation therapy machines leaving 15 per cent for
the other half. Barton et al. [9] have estimated that at the end of the 1990s there was a need for
842 megavoltage machines in Africa, 4936 in 12 low and middle income countries in the Asian
Pacific region and 1530 in 23 selected Latin-American countries (see also Chapter 9). Limited
maintenance and outdated cobalt sources compound the problem. In low income countries
particularly, there are no medical oncologists and/or paediatric oncologists, and few have
adequate numbers of other specialists, including oncology nurses.
Chemotherapy and hormonal therapy are available practically everywhere, although many
countries purchase only essential cytotoxic drugs based on the WHO Essential Drugs list [10].
Even so, deficiencies in procurement practices of these inexpensive, generic drugs often lead to
intermittent supplies. Cost is also a major issue since much or all of the care, particularly drug
costs, must frequently be paid for out-of-pocket. Remarkably, sometimes only more expensive
drugs are available in the absence of drugs with similar activity, for example, docitaxol versus
paclitaxol in breast cancer [11]. These issues are discussed further in the following section.
These multiple deficiencies are compounded by the temptation faced by the few trained health
workers (and those who aspire to become health workers) to emigrate in search of improved
professional and financial rewards. Training fellowships given by high income countries (which
may have been established with the intent of improving the workforces of low income countries)
can significantly exacerbate this problem, but professionals are also actively recruited by
some high income countries or by commercial organizations, some of which may even train
nurses in developing countries with the specific intent of arranging for them to work abroad.
Such practices may overcome the government regulations established by some European countries to prohibit recruitment from countries with very limited numbers of health workers.
Similarly, an increasing number of trained persons move partly or entirely into the for-profit
health sector of their own country, leaving the poorer elements of the population with even less
access to care. Some would argue that countries should simply train more doctors, nurses,
or other health professionals than they themselves require, but this apparently simple solution
pre-supposes a sufficient number of institutions of higher education, of teachers, and, as
mentioned, of sufficiently qualified young people to receive higher education that is, a higher
level of socio-economic development than currently exists. Although emigration rates vary markedly from one country to another, and statistics can be difficult to compile, according to the
Center for Global Development on average 40 per cent of African-born physicians work outside
their country of birth, and for some countries the figure may be as high as 70 per cent [12].
APPROACHES TO CANCER CONTROL IN DEVELOPING COUNTRIES
Migrants are more likely to come from countries with better health systems (which some have,
seemingly counter-intuitively, interpreted as indicating that migration of health workers benefits
their country of origin. Although a small number of ex-patriots do assist in training or send
money to family members in their countries of origin) this can compensate only to a very limited
degree for the enormous limitations in human resources.
Approaches to cancer control in developing countries

Treatment has always been the primary approach to cancer control, in developing countries as in
the rest of the world, as the immediate and obvious need is to care for sick patients. In contrast,
the justification for prevention and early diagnosis programmes may need considerable development. Preventive strategies depend upon epidemiological research, which has been mainly
conducted by investigators in, or from, high income countries, although there are a number
of notable exceptions, particularly when a generally uncommon cancer occurs at high frequency
in a particular population or has prominent clinical features that bring it to attention, such as do
Bilharzia-related bladder cancer, nasopharyngeal cancer, and Burkitt lymphoma. In developing
countries, the imbalance between the cancer burden and the health workforce leaves little time for
clinical oncologists to think about epidemiology or public health, and epidemiologists are also
grossly under-represented in the health professions in these countries. The relatively few health
professionals who deal with population health in the poorest countries continue to be concerned
almost exclusively with infectious diseases and nutrition, rather than NCDs.
Because in the past, cancer has accounted for a much smaller fraction of the disease burden,
it has been under-emphasized or even omitted from educational programmes, such that primary
care physicians and even specialists may not consider a diagnosis of cancer. Most oncologists do
not see late diagnosis as an issue that falls within their purview indeed, for the most part it is
accepted as the usual way in which cancer presents which, in such countries, is, in fact, the case.
This perception has become pervasive, so the emphasis on cancer as a public health problem is
minimal. International bodies, until quite recently, have also focused on health issues that are
much less expensive and easier to combat thus providing no encouragement to governments
to establish cancer control programmes. As a result, there have been few serious attempts to
address cancer at the public health level, while cancer services have generally developed in a disorganized fashion, have often depended upon a small number of individuals who have, for one
reason or another, been motivated to establish programmes some of which have developed into
major cancer institutes or to persuade a state or national government to provide funds for the
development of cancer services of some kind.
Recently, this attitude has undergone a welcome transformation; cancer has been recognized
as an important health problem in developing countries. This is doubtless a consequence of the
epidemiological transitions and inexorable increase in the cancer burden (see also Chapter 21) as
well as greater control of communicable diseases. Sadly, this recognition has come at a time when
cancer is about to become the leading cause of death in the world. Nonetheless, the World Health
Assembly resolution, WHA58 22 (2005), has done much to ensure that governments, even those
of the poorest countries, recognize that cancer is an important health problem [13].
Resolution WHA58 22 urges member states to implement 18 actions relating to cancer control,
the first of which is:
To collaborate with the Organization in developing and reinforcing comprehensive cancer control
programmes tailored to the socio-economic context, and aimed at reducing cancer incidence and
mortality and improving the quality of life of cancer patients and their families, specifically through
the systematic, stepwise, and equitable implementation of evidence-based strategies for prevention,
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early detection, diagnosis, treatment, rehabilitation and palliative care, and to evaluate the impact of
implementing such programmes.
As stated in the WHA resolution, all aspects of cancer control are important for all countries,
although priorities need to be adjusted to the available resources as well as the pattern of cancer.
An important question is whether existing resources are being optimally used. Changes can often
be made, at little cost, for example, to put a greater emphasis on cancer in the curricula of nurses,
doctors and other health workers, and to introduce tobacco control measures and palliative care.
Attention should also be given to improving communication within the health services and to the
health service structure which is particularly important in a disease which, if to be effectively
dealt with, requires access and communication among many disciplines. Determining priorities
in the context of available resources requires, as recommended in resolution WHA 58 22,
the formation of a national cancer control committee, comprised of experts from all relevant
disciplines, and the development of a national cancer control strategy.
Developing a national cancer control strategy

A number of steps need to be taken in the development of a national cancer control strategy. Of critical importance is an understanding of the cancer burden and the resources available to deal with it.
Equally important is the political will to act on the plan, and to assign a budget to at least high priority
elements of it (as also applies in developed countries, as discussed in Chapters 7 and 17). Coordination
of the development of the plan will be required, and opportunities provided for expert input into
relevant sections, as well as involving a broad range of stakeholders, for without their buy-in and
sense of joint ownership, cooperation will be limited. The initiative for the development of the plan
may come from the government, the oncology community, or even civil society. Where the government is not the prime mover, steps should be taken to ensure that there is governmental support.
Cancer survivors can often play an important role in lobbying politicians, participating in awareness
raising campaigns and the development of non-governmental funding (see also Chapter 16).
Assessing the problem

The initial step in developing a national control strategy is an assessment of the national situation
with respect to the cancer burden and the pattern of cancer that is, the incidence and rank order
of sub-types, the prevalence of risk factors, and the resources (particularly the quality and quantity of human resources) and infrastructure available to address each of the major elements of
cancer control. This information is essential to the determination of priorities. Limited resources
mean that good data, for example, from population-based cancer registries, is sparse; there were
only 47 members of the International Association of Cancer Registries in Africa, for example,
among the total of 449 members listed in 2006 [14]. While institutional-based registry information can give a sufficient idea of the pattern of cancer for priorities to be determined, populationbased statistics are invaluable both to describe the existing pattern of cancer and to track trends
in incidence and mortality. Population-based survival rates, if available, also give a truer picture
of the national situation without distortion by the potentially unrepresentative results of a few
major institutions. Even the best registries, however, cannot provide an estimate of access to care
or the quality of diagnosis and treatment, while survival data, however valuable, is rarely collected
because of the increased work load and generally poor follow-up which precludes accurate information. Registries could also collect information on available resources within the defined population they relate to, but in very low resource settings, where there is a great deal of heterogeneity
(e.g., between urban and rural regions) such information may not be representative of the entire
nation. Programmes conducted by non-governmental organizations are often hindered by lack
DEVELOPING A NATIONAL CANCER CONTROL STRATEGY
of funds, while government statistics are limited, often out-of-date, and vary in accuracy.
Information on the numbers of nurses, primary care physicians, and specialists is usually available, but the amount of time spent on dealing with cancer is difficult to calculate as much cancer
diagnosis and care is delivered by persons without special training in cancer.
Setting priorities
Priority setting must derive from the situational analysis as described. The WHO has developed a
set of brochures describing the process of cancer control planning, with guidance for determining
the most appropriate actions in low, medium, and high resource settings [15,16] a format that
has been followed by others. It is often suggested that the highest priority in cancer control in the
low and middle income countries is palliative care, since the immense burden of suffering can
most immediately be relieved through effective symptom control, particularly pain, and attention
to psycho-social problems. Prevention is also given a high priority, since this can be accomplished
without major capacity building for the care of cancer patients. But while both are critically
important, palliative care alone can only reduce morbidity, not mortality, while preventive measures, even if they meet all expectations, will, for the most part, not have an impact on cancer
incidence rates for decades. Thus, even in the poorest countries, treatment must be afforded a
significant place in the national cancer control strategy, with an emphasis on potentially curable
patients. This means that there must be vigorous efforts to detect cancer earlier so that more
patients present at a stage when treatment is less complex, toxic, and expensive and more likely
to result in cure, even in the presence of severe resource limitations, assuming that at least some
accessible facilities are able to provide competent care. International collaboration is likely to
be extremely valuable in assisting countries to escape from the vicious cycles resulting from
overloading of available resources with the effect this has on both access to and the efficiency of
cancer treatment.
In broad terms, the highest priorities are relatively easy to identify, since they are universally
necessary for any cancer control programme and cost little, although even these may face a variety
of obstacles. They include full implementation of the Framework Convention on Tobacco Control
(FCTC) [17], education of both the public and the health workforce about the early signs of cancer,
ensuring efficient navigation through the health care system when cancer is suspected, so that
prompt access to the available facilities for diagnosis and treatment is assured, and the provision
of palliative care to all who need it. Important too, is the provision for accurate data collection
(associated with contextually relevant research see hereunder) both to provide evidence on
which cancer control interventions can be based, and to permit evaluation of the interventions
undertaken. Rehabilitation, including psychological rehabilitation, is important when patients
have undergone mutilating surgery, or suffer from the late effects of chemotherapy or radiation.
Where resources are totally lacking, there is no choice but to allow cancer control to continue in
an unplanned way (as was the case, for example, in the technologically advanced countries for
decades), although at a minimum, resource deficiencies can be identified such that attempts can be
made by the government or civil society to fill the gaps. In the modern world much can be accomplished even with very limited funding, for example, through the development of international
relationships with organizations or institutions able to provide both expertise and funding, and, in
the context of training and education, through the use of free (open) resources for education available via the internet. Although broad-band internet access is constantly expanding, any form of
internet access remains a problem in the poorest and most remote locations. Nonetheless, opportunities for supplementing available expertise, for example, in pathological and radiological diagnosis, via the commons (i.e. resources owned by the global community rather than by individuals)
and for other on-line interactions, such as international multidisciplinary meetings, are constantly
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increasing and can be used to supplement standard educational approaches, including basic, continuing, and specialist education, as well as providing accreditation by recognized authorities.
Challenges faced by developing countries in improving and

implementing cancer control strategies
Cancer registration
Cancer registration can be considered part of assessment since it provides incidence data at
a population level, and, depending upon resources available, data on mortality and survival, and
so is a valuable tool in developing a national cancer control strategy. Registration, however,
can also be of great value in assessing the outcome of interventions. For example, a reduction
in incidence could result from a preventive measure, and an increase in survival or decrease in
mortality can result from earlier detection or improved treatment. In developing countries,
however, survival data is often inaccurate because of poor follow up, and poor practice in
completing death certificates may also lead to inaccurate mortality data. Even incidence data for
some cancers may be unreliable because of misdiagnosis. In addition, although registries are
inexpensive, because of the undeniable needs of patients and high cost of patient care, the support
of a cancer registry may literally be at the expense of patient care unless supported by outside
funding. The next best thing to population-based information is the pooling of data collected
from individual institutions, particularly those that serve large populations, or where (as for
example, in former Soviet Union countries), each geographical division of the country has
a cancer centre. At times this can be misleading because certain cancers may never reach tertiary
referral centres (e.g. hepatoma) and their incidence therefore remains unknown in the absence
of a population-based registry.
Prevention
Prevention, no less than treatment, is closely linked with business and politics and conflicts may
arise because one sectors gain is sometimes another sectors loss. Effective tobacco control, for
example, would result in a major restructuring of the tobacco industry at the very least, while
even vaccines are products which can deliver enormous profits, particularly if the target population for vaccination is large and suppliers few. Clearly, it is imperative that decisions are made
on the basis of complete or at least balanced evidence, by persons without a conflict of interest.
Governments, of course, are susceptible (and those in the poorest countries are often the most
susceptible) to lobbying by industry representatives, and to the provision or withdrawal of donations, whether in the context of election campaigns or the consideration of specific legislation,
such as that relating to tobacco control. While non-governmental organizations can influence
governments and public opinion through their own lobbying, such organizations are relatively
few and frequently weak compared to their counterparts in high income countries. Helping to
build civil society in low income settings is an important role for organizations and influential
individuals interested in cancer control.
Health care providers, particularly in primary care, have a critically important role to play
in prevention. The decision of a high proportion of doctors in the United Kingdom to give up
smoking, for example, had a major impact in reducing lung cancer rates [18] and advice on the
part of a doctor to give up smoking has been shown to be effective in persuading smokers to quit.
Advice on diet and other important health messages could be equally valuable, but unfortunately,
health providers see their role largely as dealing with sick people rather than helping to keep
them healthy. Basic medical and nursing training in most countries, and perhaps particularly in
CHALLENGES FACED BY DEVELOPING COUNTRIES IN IMPROVING AND IMPLEMENTING CANCER CONTROL STRATEGIES
developing countries, includes little or no information on the importance of promoting a

healthier lifestyle in their patients. This could easily be changed at minimal cost. Schools and
universities provide excellent opportunities to give age- and culturally-sensitive information
about cancer and its prevention; conversely, providing important health educational messages is
more difficult when there is a high level of illiteracy particularly in rural regions and females,
who, in general, receive inferior educations. The Internet is rapidly becoming a major source of
health information in high income countries, but lags far behind in poorer nations (the so-called
digital divide), and, of course, requires literacy. Yet radio is almost universally available, television
and video increasingly so, and mobile phones are available even in the most remote villages, even
if owned by only a small number of the inhabitants. Maximal use of these tools and many others
can make a major difference to the knowledge of the general public, of their health advisors, and
of policy makers even in the poorest of countries.
Tobacco control
Tobacco control is of particular importance to low and middle income countries, whose smoking
rates are rapidly increasing; as smoking decreases in high income countries, the tobacco industry
is redoubling its efforts to increase smoking in developing countries. The measures recommended
by the FCTC [17] should be considered a high priority in any national cancer control plan. As of
February 2009, 162 countries had ratified or accepted the Convention (the United States is a
prominent exception). Unfortunately, the tobacco industry is doing everything it can to prevent
implementation of the recommendations. The governments of poor countries particularly, even
if they have ratified the treaty, often succumb to the temptation of accepting funding from the
tobacco industry in return for not implementing the FCTC as intended [4,19].
Because of the cost of smoking, the tobacco epidemic is at various stages of its development
in countries at different levels of socio-economic development, being still at an early stage of
development in the poorest countries, and well past its peak in the United States and many
European countries (Figure 22.7). The introduction of anti-smoking legislation in the high
income countries has been made easier by their decreasing smoking rates; in many high income
countries only 20 to 33 per cent of people now smoke, compared to peak smoking rates of around
70 per cent in the 1960s and 70s (see The WHO Tobacco Atlas [20] and Chapter 2). By the same
token, in countries where the rate of smoking is still, at least on average, quite low (e.g. many
sub-Saharan African countries), a small and rapidly diminishing window of opportunity exists
whereby anti-smoking legislation could be introduced and enforced by the government before
there are sufficient smokers to make such legislation extremely unpopular. In many other
countries, such as China [5], where the tobacco epidemic is advanced but still not at its peak,
discouraging young people from starting to smoke is very important, but will have little impact
prior to 2050 on tobacco-related cancer rates, whereas encouraging older adults to give up smoking will lead to a significant reduction in cancer rates (and deaths) in the first half of this century,
and is a matter of the greatest urgency. Some progress in tobacco has been made in China, for
example, the introduction of much higher tobacco taxes.
Many developing countries, particularly in South and South-East Asia, also face a significant
frequency of use of smokeless tobacco particularly chewing habits which are associated with
oral cancer [21,22]. Chewing habits tend to be particularly common in poorer populations,
which are more difficult to reach; users of smokeless tobacco are more likely to live in rural
regions, while those who smoke manufactured cigarettes are more likely to live in urban regions.
Behavioural modification may therefore need to be approached in different and culturally
sensitive ways.
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Hungary
Spain
USA*
UK*
S.Africa
Thailand
Morocco
Mexico
Sierra Leone
Bolivia
Effective legislative action more

easily taken before or after high
smoking rates : ACT NOW
Bangladesh
India
Burundi
0
1000
2000
3000
4000
Cigarette consumption per person per annum
Fig. 22.7 Progression of the tobacco epidemic in various countries as measured in terms of
cigarette consumption.
*Countries in which consumption has greatly diminished in recent years as a consequence of
tobacco control measures.
Source: most recent data from WHO.
Diet
Fruits and vegetables generally comprise a higher fraction of the overall lower caloric intake
in low income populations, where the majority of people lead anything but sedentary lifestyles,
so that cancers associated with diet, such as colon cancer, tend to have a much lower
incidence. However, in developing countries, the fraction of people who are overweight is steadily
increasing at least in the higher income strata. Unfortunately, there is such gross inequality
between the richest and poorest segments of the populations in low and middle income countries
that malnutrition often remains a serious problem while obesity is an increasing cause of NCDs.
HPV vaccines
An issue of particular importance to developing countries is the role of HPV vaccines in controlling cervical cancer (see also Chapter 6). Although an exciting advance, there remain a number of
questions about the role of such vaccines in preventing cervical cancer in low and middle income
countries, particularly the cost and the feasibility of vaccinating a sufficiently large number of girls
and young women, and possibly boys, to make a difference. Cervical cancer affects some 500,000
women per year and causes approximately 300,000 annual deaths a high proportion of which
are likely to occur in hardto-reach populations since the disease has a higher incidence in lower
socio-economic groups. For various reasons it is clear that HPV vaccine cannot be the sole solution to the control of cervical cancer; screening programs will continue to be important for the
foreseeable future. The crude incidence of cervical cancer varies greatly in different parts of the
world, and the highest rates of around 80 per 100,000 occur in countries at low socio-economic
levels. The cumulative risk up to the age of 64, however, of developing cervical cancer is only some
3 to 6 per cent even in high incidence regions, which means that a very large number of girls must
be vaccinated in order to significantly reduce the incidence of cervical cancer; or, from a different
perspective, a large majority of vaccinated individuals are not at risk for cervical cancer. Thus this
vaccine differs markedly from most vaccines which are directed primarily at the prevention of a
serious and highly prevalent (in the absence of vaccination) infectious disease. The financial cost of
preventing cervical cancer at several hundred dollars for a course of vaccination (at the present
time) compares poorly with, for example, measles prevention. According to the WHO, it costs less
than one dollar to immunize a child against measles, a disease which affects 20 million children per
year and results in almost 200,000 annual deaths. Also important is that the duration of protection
with the available HPV vaccines remains unknown; if booster doses are required after several years,
costs will be higher, and population coverage of sexually active women is likely to be lower. Screening
for cervical cancer, unlike vaccination, also results in the detection of treatable benign diseases, such
as infections and prolapsed uterus, which may cause considerable distress to women.
All of these considerations have implications for the toxicity profile of the vaccine, which, in
view of the relatively small fraction of women who would benefit, must be, perhaps, even more
favourable than those of vaccines used to prevent serious acute infectious diseases. These considerations may well be modified by the development of further vaccines and by likely cost reductions in the future, as discussed in Chapter 6. For the HPV vaccines, adverse events reported to
date include vascular thrombosis, seizures, anaphylactic shock and possibly an increase in the
incidence of grade 2 and 3 CIN lesions, as well as genital warts (at least with the quadrivalent
vaccine) in women previously exposed to HPV. The FDA has stated that by July 2008 over
16 million doses of the quadrivalent vaccine, Gardasil, had been distributed in the United States
(the number of people vaccinated a critically important question is not provided) and almost
10,000 adverse events reported; although more than 90 per cent of adverse events are reported to
be not serious; and many, possibly none of the deaths associated with vaccine administration (as
this book goes to press, believed to be over 30) were caused by the vaccine [23]. However, given
that there is little or no information on vaccine-related side-effects in girls and young women in
developing countries, where the high prevalence of malnutrition, other infections, poor hygiene,
and more limited health care could influence the pattern or outcome of adverse events, it would
seem prudent to ensure that accurate data on toxicity is collected in these countries as vaccination
programs proceed. In countries where the incidence of cervical cancer is low even without
screening (e.g. in many Middle-East countries), vaccination programs may not be indicated.
These issues should be taken into consideration when deciding whether HPV vaccination will be
incorporated into the national cancer plan.
Horizontal and vertical approaches

It is in the context of prevention in particular, that cross-cutting or horizontal approaches to
disease control are of particular importance, since many risk factors are important to multiple
diseases and cost-benefit ratios may be much more favourable in this context. For example, the
control of infectious diseases that predispose to cancer in low and middle income countries, and
for which treatment or vaccines are available, such as schistosomiasis, hepatitis B and C, and
HIV/AIDS, although primarily undertaken because of the infectious disease itself, will also
reduce the incidence of the associated cancers. It is, perhaps, important to note that cancer has
become the commonest cause of death in HIV-infected individuals treated with highly active
anti-retroviral therapy.
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Many NCDs share risk factors such as tobacco-related cardiac and pulmonary diseases and
a broad range of conditions associated with overweight or obesity. Horizontal approaches, via the
control of common risk factors, are often emphasized in the context of public health, as discussed
in Chapter 21. Vertical measures, that is, the control of a disease through specific measures relevant only to the disease in question, are necessary, but have the danger in resource-poor settings
that improved control of one disease may be achieved at the expense of worsening the situation
in other areas of health, because the use of the limited available resources is distorted. It is
worrisome that in 2007, of $2.5 billion in aid (in the health sector) to developing countries spent
by governments, philanthropic organizations, and pharmaceutical companies, 80 per cent went
to developing products for tuberculosis, malaria, and HIV infection [24]. A judicious mixture of
horizontal and vertical approaches would seem to be the best prescription.
Early detection and screening programmes

The role of the primary care provider in cancer treatment is, in some respects, as important as that
of the cancer specialist, since the best chance for cure is when the possibility of cancer is considered at an early time-point in the natural history of the disease. Perhaps the most important and
widely applicable approaches to early diagnosis are education of the public and of the primary
and secondary care providers so that care is sought at the earliest time, cancer is considered when
warranted, and appropriate diagnostic steps are taken. It is essential to dispel the belief that cancer
is always incurable. A focus on early detection of cancer is particularly important in developing
countries where the majority of patients present with advanced disease, although early detection
programmes must be linked to efficient diagnostic and treatment programmes.
While raising awareness about the early signs of cancer applies to all cancer, specific screening
programmes for cancer are a different matter, since for some cancers at least, there is continuing
controversy with respect to cost-benefit ratios and the ability of screening to lead to a reduction
in mortality (see also Chapter 4). This applies to all countries, but takes on much greater significance when resources are limited and particularly when treatment, even of early or in situ
disease, may require significant human and other resources. In many cases trained personnel and
equipment are not sufficient to permit large scale screening programmes (e.g. mammography for
breast cancer and cytology for cervical cancer), while the detection of pre-symptomatic disease,
a fraction of which will never develop into invasive cancer, may, arguably, be of secondary importance in populations in which there is a significant prevalence of un-diagnosed symptomatic
disease. An important decision for the national cancer control committee is whether screening for
any cancer can be justified. Even when simple, inexpensive techniques for screening have been
developed and shown to be feasible and effective in developing countries, expanding such programmes to a national level may be difficult or impossible because of economic, logistic, or other
reasons, including the lack of treatment facilities.
Some of the criteria relevant to the decision to screen for a particular cancer are its incidence
(if unavailable, its rank order in hospital registries), attitudes and knowledge of the public, the
technique to be used, its cost, required skill level and potential inconvenience or unwanted
effects, the estimated number of patients in the target population (usually defined by age) who
must be screened in order to detect a single early cancer (such information may not be available
in the absence of population-based data), the availability and affordability of appropriate (definitive) diagnostic tests and of treatment, and the willingness of screen-positive individuals to
undergo further diagnostic tests as well as the recommended therapy. Expensive screening techniques, such as mammography, cytology, endoscopy, the measurement of serum prostate-specific
antigen and even magnetic resonance imaging are all used to a greater or lesser extent as screening
tests in high income countries, but not only are these techniques generally beyond the reach of
countries with limited resources, apart from the wealthier sectors of the population [25], but with
the exception of screening for cervical and oral cancer, no screening techniques have, to date,
been shown to lower the mortality rates, in low and middle income countries, of the cancers they
are designed to detect in the low and middle income countries. The value of screening may vary
over time and from one population to another, with factors such as the level of education of the
public and the development of new treatment approaches potentially reducing its value. There is,
for example, an ongoing debate on the value of screening by mammography and the measurement of prostate-specific antigen in technologically advanced countries [26,27], as discussed in
Chapter 4.
Nevertheless, for two cancers, uterine cervical cancer [28,29] and oral cancer [30], screening for
pre-malignant lesions has been shown to reduce mortality and to be cost-effective in research
studies performed in developing countries. For cervical cancer, a disease in which 80 per cent of
global deaths occur in developing countries, the techniques used have included direct visualization after painting the cervix with dilute acetic acid (VIA) or Lugols iodine (VILI) [28], or, more
recently, the detection of HPV in cervical mucus, which in India, was shown to be more effective
than VIA in reducing incidence and mortality [29]. The recent availability of an inexpensive test
for HPV requiring just three hours [31] suggests that HPV testing, which has the advantage of
objectivity, may become the preferred screening test in developing countries. In both cervical and
oral cancer, the therapy for lesions that have a high likelihood of transformation into invasive
cancer is, in the vast majority of cases, simple, inexpensive, and can be carried out by trained
nurses or even medical assistants. Indeed, detection (using direct visualization) and treatment
(at least, of the majority of pre-malignant lesions detected) can be accomplished in a single visit
in see and treat programmes thus avoiding the possibility that screen-positive women will fail
to keep a subsequent appointment for therapy. Although this may result in some over-treatment,
side-effects and long term consequences of treatment are minimal such that this should not be
a reason to await a definitive diagnosis, for example, by biopsy.
In contrast, in early, pre-clinical breast cancer, whatever the method of screening used, treatment
requires surgical intervention and often radiation therapy (for example, if breast conservation is
envisaged) and some patients receive chemotherapy and hormonal therapy too. Even carcinoma in
situ, and many benign breast lesions require surgical intervention, and radiation therapy is also
sometimes recommended for carcinoma in situ. Clinical breast examination, designed to detect
early breast lesions, but which, in unscreened populations in developing countries, will inevitably
detect some advanced cancers, requires a relatively high degree of skill in the health workers (usually
nurses, midwives, or doctors) who perform the screening. Moreover, to have an impact on cancer
mortality, a high fraction of the female population must be screened (especially in countries where
breast cancer, although important in rank order, still has an incidence 3 to 5 times lower than in
technologically advanced countries). The diversion of significant numbers of health workers into
screening programmes could lead to a negative impact on other health services.
A theoretically attractive alternative to clinical breast examination is breast self-examination
(BSE). However, in two recent randomized studies (in Russia and China) this has not been shown
to result in a reduction in mortality, although the frequency of biopsies for breast lumps (the
majority were benign) was doubled in the self-screened groups that is, there was a greater
burden on the health system and more psychological stress for women [3234]. While these
studies can be criticized and their generalizability questioned, the fact remains that there is no
evidence at present that BSE is effective in reducing mortality from breast cancer.
Any form of breast cancer screening will result in over-diagnosis, with some women being
subject to potentially expensive and toxic treatment they do not need (as well as significant,
unnecessary psychological trauma). This risk could be greater in countries with more limited
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diagnostic resources. In addition, resources dedicated to screening may be wasted since it

has been reported that women screened for breast cancer often refuse diagnostic tests and/or
treatment [35]. Other studies have shown that education alone can favourably alter the distribution of staging [36], such that at present it cannot be recommended that breast cancer screening
be provided as a service in developing countries it should only be undertaken in a research
context. On the other hand, sensitization of both the public and primary health care providers to
the potential significance of breast lumps could well significantly modify the present pattern of
stage distribution such that a higher fraction of patients have early stage disease, resulting in
decreased mortality from breast cancer even without significant changes being made to treatment, (assuming that reasonable care is available to the population in question) although simultaneous improvement of treatment, to the extent possible, is to be highly recommended.
Diagnosis
The vast majority of cancer patients require a tissue diagnosis, the remaining few (e.g. certain brain
tumours) a radiological diagnosis. The quality of the diagnosis is important for many reasons,
ranging from cancer registration (a major pillar of cancer public health) to cancer treatment (the
goal of clinical medicine) and research. Unfortunately, as with other highly skilled health professionals, there is a dearth of well trained pathologists and radiologists in developing countries, and
numerous other obstacles to good diagnosis must be overcome including limited skills, paucity
of imaging equipment, major delays in equipment maintenance and repair, limited or no access to
reagents, and few and/or poorly trained technicians. There may be lengthy delays in tissues reaching pathologists, or in pathology reports reaching the treating physicians. Many of these problems
could be overcome with limited expenditure, far less than the cost of treatment. Immunophenotyping
is often available in a very limited number of institutions (mostly private) in the poorest countries,
yet, assuming good technique, this can often greatly improve the accuracy of diagnosis and so
potentially increase survival rates, at a lower overall cost. Similarly, testing for estrogen receptors in
breast cancer, essential for the efficient use of hormonal therapy, is often not available, leading
either to women who could benefit from hormonal therapy not receiving it, or women who will
not benefit being subjected to oophorectomy or several years of hormonal therapy. Perhaps because
cancer control is primarily seen as a public health issue, the quality of diagnosis is often overlooked
or at least given inadequate attention. This needs to be rectified at all levels training more pathologists, introducing at least basic immunophenotyping in addition to the standard haemotoxylin/
eosin staining for histological diagnosis, and providing more access to consultation. Information
technology permitting the national or international transmission of digital images (whether
relating to pathology or radiology/nuclear medicine) of sufficient quality for diagnosis holds
much promise for both training and consultation, and could also help speed up the time required
to make a diagnosis when a patient is at a distant location tissue could be processed by a technician or junior pathologist and transmitted to a larger centre for diagnosis. Other kinds of images
could also be read at a central site. Maximal benefit from information technology will, of course,
require good health services as well as well trained radiology and pathology technicians.
Treatment
Treatment is a critically important element of cancer control plans even in the lowest income
countries, since patients suffering from cancer cannot be ignored. Moreover, no matter how
limited resources may be, if treatment is not included in the national cancer control plan,
a significantly higher fraction of patients who will develop cancer in the coming decades will die.
At the very least, consideration should be given to improving the efficiency of existing treatment
CAPACITY BUILDING
programmes particularly with regard to potentially curable cancers associated, where possible,
with programmes dedicated to earlier detection.
In high resource countries, as reported in the Eurocare-4 study [37] and by the US SEER
programme [38] on average some 50 to 64 per cent of all cancer patients are alive at 5 years.
Unfortunately, the proportion of cancers that are curable is significantly lower in developing
countries, both because the cancers are generally advanced at the time of diagnosis and because
treatment is frequently sub-optimal. As described, the limited resources for diagnosis and investigation into the extent of disease result in more frequent wrong or incomplete diagnoses, and
a fraction of patients is likely to be under-staged that is, have more advanced disease than is
recognized, because of the lack or cost of modern imaging modalities. This, coupled to the high
cost of treatment relative to the financial resources available, the lack of skilled cancer surgeons,
poor access to radiation therapy, the lack, or sporadic availability of cytotoxic and other drugs,
inadequate supportive care, limited specialized training, and inadequacies and overcrowding in
treatment facilities, are some of the reasons that cancer mortality rates in developing countries
particularly low income countries are much higher in proportion to the incidence of cancer,
than those in technologically advanced countries.
National mortality rates reflect, of course, entire countries, which can be quite heterogeneous
with respect to the provision of care. Cancer centres and major hospitals are few in number, and
usually located in urban settings, whereas in the low income countries, the bulk of the population
is in rural regions. As a result, patients often have to travel from their home and stay in or close to
the treatment centre, for example, when adequate supportive care cannot be provided closer to
home, or for radiation therapy. This may cause great hardship from loss of income or difficulties
in caring for other family members. Developing an ability to provide basic supportive care and
even straightforward chemotherapy close to home, for example, at a local or district hospital,
after diagnosis, treatment planning and more complex treatment has been provided in a tertiary
care setting, could significantly reduce the negative financial impact of serious disease.
It is difficult to obtain realistic estimates of survival rates, but where such data is available,
or based on mortality data, there is no doubt that survival rates are substantially lower than in
more developed countries. But, at least in paediatric cancer, there is evidence that countries with
higher health expenditure and which are engaged in international programmes have improved
outcomes for a given socio-economic level of development [39].
Capacity Building
To ameliorate deficiencies in diagnosis, staging and treatment in low resource settings, much more
effort needs to be made to develop human capacity firstly, by improving the skills and knowledge
of existing experts, and secondly by expanding the number of health professionals. In the education of the current workforce in low resource countries, experts from technologically advanced
countries often have little understanding of the conditions in developing countries and assume
that a discussion of the latest research findings and treatment approaches will somehow lead to
improved treatment in the developing country. While such information has some educational
value, it is usually not applicable to the day-to-day practice of oncologists in developing countries.
Similarly, sending staff from developing countries for training programmes in Western centres
particularly those lasting for some years may not only reduce further the local capacity, but lead
to staff emigrating in search of better professional circumstances and a higher living standard.
If such trained persons do return to their own country, whether or not they stay may depend
greatly on professional and personal satisfaction, and much that they have learned abroad may not
be applicable to their home circumstances. Occasionally, individuals trained abroad can help move
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things forward in their own country, but in general, training in the local context has the advantage
that it brings immediate benefits to patients. Even when training abroad is not undertaken, oncologists in developing countries may try to emulate their colleagues in technologically advanced
countries uncritically that is, without careful consideration of cost benefit ratio, for example, the
real extent of the difference that more sophisticated tests, or more expensive drugs will make to
outcome. Often, for reasons of drug or radiation therapy availability, cost, toxicity, or personal
preference they introduce significant (un-evaluated and frequently on an individual basis) treatment modifications and because supportive care is often inadequate, the outcomes actually
achieved are unlikely to match those obtained in the affluent setting. The high cost of new drugs
and monoclonal antibody therapies raises considerable debate even in resource-rich countries (see
Chapter 10) and a balance must be struck between making available standard therapy appropriate
in the context of the local resources for a large number of patients, and providing more complex,
expensive therapy for a small number of patients. This said, interventions such as high dose
therapy with stem-cell rescue, which are available at a small number of centres in many middle
income countries, will have a minor, even immeasurable, impact at a national level, but it may still
be reasonable to establish a small number of such programmes at the leading institutions when
resources allow, in part to provide for patients who can benefit from such programmes, and in part
to improve professional morale and expertise and to be better prepared for the future. Indeed, one
way of moving forward is to identify centres of excellence/competence, either in all aspects of
cancer control, or for specific elements for example, related to the treatment of a specific disease,
or palliative care. Such centres can then provide focal points where others can be trained, such that
satellite or even centres of equal competence can be developed in the same country or region. Such
centres, particularly if comprehensive cancer centres, should develop links with the community,
to improve early detection and to collaborate in the provision of palliative care, and undertake
patient care, professional education, and research (Figure 22.8).
The cost and quality of chemotherapeutic drugs

Many factors go into the cost of drugs required for cancer sometimes differing, at least in
degree, according to the class of drug (e.g. cytotoxic versus antibiotic or antiemetic). These
include the costs of drug development, (higher prices can be commanded while the drug is on
patent), manufacture, and formulation. Costs are generally much lower when drugs are manufactured in a developing country, particularly by a locally established company, but importation may
give rise to a series of costs that are external to manufacture and packaging, including locally
applied taxes and importation fees, shipping and delivery charges, as well as fees paid to local
middle-men. Drug procurement and shipping procedures are also relevant to drug cost, since
drugs may be inactivated due to failure to maintain them within an appropriate temperature
range, or supplies may be exhausted because orders were not placed in time. In this circumstance,
national drug supplies may be affected, or, when public and private procurement is separate,
drugs may remain available, but only from more expensive, private sources. Sometimes drugs are
over-ordered, such that they exceed their expiration date and are thus wasted (although activity
is often minimally decreased for months after the expiry date). For these and other reasons,
including corrupt practices, even inexpensive drugs may not be available to patients in developing
countries for lengthy periods such that many patients may have significantly inferior treatment,
or inordinate delays that have a negative impact on treatment outcome.
Drug quality in developing countries is also an important issue. When drugs are purchased
from providers of generic drugs located in developing countries, quality and composition may
differ from that of the original product, occasionally to the point of inactivity or even unanticipated toxicity, for example, from a contaminant. The WHO provides a broad range of guidelines
CAPACITY BUILDING
Training
Care
Research
Early Detection
Community
Treatment
Cancer Unit/Center
Palliative Care
Community
Creation of Evidence/Clinical Studies

Education and Training of Health Professionals
Fig. 22.8 A strategy for cancer control used by the International Network for Cancer Treatment and
Research (INCTR). This strategy, which can be applied to essentially all cancer control projects is to
develop a centre of excellence in care, education, and research which can help spawn centres of
competence in other parts of the country or region. Training of a variety of professionals will be
necessary in order to develop adequate early detection, clinical studies, standardized therapy,
rehabilitation, and palliative care. This should be based on adequate evidence justifying the priorities
identified and the interventions selected as well as support from the community, which may, along
with the government, take a major role in promoting necessary legislation and public education, as
well as patient support.
relating to the manufacture, quality control, and certification of medicines as well as the development and implementation of a national drug policy [40]. It also provides a list of essential
medicines, which includes cytotoxic drugs [10]. These documents can be invaluable, given the
necessary political will and financial means to implement recommendations at a national
or regional level.
Paying for treatment and standardization of care

Most patients in high-income countries have health insurance, whether administered by the
government as part of a national health service, provided by an employer, or by personal choice.
This is not the case in developing countries, where the majority of patients pay out-of-pocket. In
more than 167 countries, out-of-pocket expenses account for more than half of the total national
health expenditure and in 87, more than 90 per cent [41]. Thus, the patients (or their familys)
ability to pay, or to take time off from work (generally unpaid), can make the difference between
acceptance or rejection of treatment, or influence the type of treatment that is given. Some
patients pay for only that part of a standard treatment regimen that they can afford, and abandon
therapy when their funds are exhausted, thus significantly reducing the chance of successful
therapy.
It is easy to see that standardization of treatment at institutional or national levels, taking
into consideration a broad range of locally relevant issues, is important not only to cost-benefit
ratios, but also to survival rates. Improved documentation of results achieved with standardized
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therapies can provide a good foundation on which to base future research research which is
tailored to the needs of the country or countries in question. Unfortunately, there is little standardization of therapy in developing countries decisions are generally left to individual practitioners who may modify therapy or change it completely at a whim, and many practitioners work
essentially in isolation; there may be only one specialist, for example, a medical oncologist, in an
entire country (and sometimes, of course, none). Much may depend upon the referral route
most patients with cancer in developing countries still see a surgeon first (usually a general
surgeon), who may perform surgery with no consultation with oncologists, and refer the patient
for further therapy only in the case of recurrent disease assuming that the patient returns for
consultation. Multidisciplinary meetings to discuss pathology, staging studies, and the most
appropriate treatment for individual patients are almost unknown in the poorest countries. Such
meetings, particularly if conducted in concert with the input of outside experts (e.g. by videoconferencing) could be of great educational value to the range of health professionals present, as well
as greatly increasing the likelihood that patients will receive appropriate care.
Rehabilitation
Rehabilitation of patients who have undergone therapy is an important issue from the twin perspectives of quality of life and an ability to re-enter the workforce (or, in the case of young people, continue their education). Those patients who are cured, however small a proportion, can have greatly
increased quality of life through the use of prosthetic devices, many of which can be produced
locally at greatly reduced cost compared to devices available in high-income countries. Similarly,
re-training to overcome disabilities or permit cancer survivors to be gainfully employed in a different way can only benefit economies. Such programs, when they exist, are often carried out by NGOs
in the poorer countries, largely because of the lack of government funding of such programmes.
Palliative care
Palliative care, as defined by the WHO, relates to the provision of medical and psycho-social care
to patients with serious (potentially fatal) illness. In the context of cancer, most experts believe
that palliative care should begin at the time of diagnosis and include a broad range of interventions relating to minimizing physical and psycho-social stress. This may, for example, include
minimizing or avoiding pain during necessary procedures, such as biopsies, bone marrow examinations, or spinal taps, and ensuring that pain is effectively controlled post-operatively. In this
regard, as well as in the context of patients with incurable disease, the level of palliative care
increases as necessary according to the progression of symptoms. Moreover, much of palliative
care can be considered preventive that is, preventing the development of significant symptoms.
Unfortunately, it is estimated that almost 60 per cent of people in the world each year who die
require palliative care, yet only a small fraction receives it. This stems from a wide range of issues,
the most important being that most deaths occur in developing countries (including most cancer
deaths), where facilities and expertise in palliative care are rudimentary or patchy, and where
many countries still do not have adequate legislation relating to the use of pain-killing medications, particularly opioids and other category C medications. Psychological and social support
are, of course, essential components of palliative care, but significant physical suffering needs to
be controlled, for the most part, before these issues can be adequately addressed, so that the most
pressing need in palliative care is ensuring adequate access to good pain control.
If palliative care is to be accessible to a large number of patients in developing countries, their
plight needs to be made clear to governments and other policy-makers (for long, for example,
RESEARCH
the International Narcotics Board has focused primarily upon preventing misuse of opioids
rather than ensuring that patients who require these drugs have adequate access), so that necessary legislation regarding opioid availability is enacted and basic training in palliative care is
provided as a standard element of the curriculum for all medical and nursing staff (and, where
appropriate, other health workers). Because of strict anti-narcotic laws and sometimes cultural
beliefs, some governments and health professionals minimize the use of opioids sometimes to
the point of refusing to prescribe them. Recently, a movement has emerged to label as torture
the deprivation of opioids from patients who clearly need them to control their pain. It sometimes takes a significant escalation of rhetoric of this kind to convince policy-makers that it is
unethical to deprive patients of symptomatic relief or of the prevention of pain and discomfort
during procedures or after surgery. Ensuring opioid availability in developing countries, however,
can be complex. It entails not only the provision of the drug or drugs themselves at an affordable
price to the patient or family (dissolving morphine powder to create different strength solutions,
preferably differently coloured, is very inexpensive, but slow release preparations are very expensive), but also ensuring that prescriptions provide medication for a sufficient time (in extreme
cases, prescriptions can be given for only 24 hours), so that repeated journeys, that can be lengthy
and extremely uncomfortable, to the nearest, but often distant hospital authorized to prescribe
opioids, are avoided. Ideally, refills and dosage adjustments should be possible at a nearby health
facility, where local doctors or even trained nurses are permitted to make adjustments in dosage
as required.
Palliation may at times entail the use of specific anti-cancer therapy (e.g. radiation, chemotherapy, or even surgery). Indeed, incurable but relatively indolent cancers may be well controlled
for many years by simple chemotherapy, while low dose radiation may be an effective way of
controlling pain, for example arising from a bony metastasis. Unfortunately, cancers tend to be
so advanced in some developing countries that by the time a patient reaches an institute capable
of delivering care (assuming that they do), much of the practice of oncology is in the realm of
palliative care. Ideally, palliative care should be introduced in a setting in which it is also made
clear that many cancers are curable, particularly when detected early, for ultimately, the prevention or cure of cancer must be the goal not simply the prevention of suffering from cancer,
however important it may be.
Research
Cancer research should be a component of all national cancer control strategies. Although
research conducted in other, mainly high income, countries should be used as the basis for interventions in developing countries to the extent possible, it is important to recognize that the
research conducted in high income countries is directed to their own needs or circumstances and
will often be irrelevant to cancer control in low and middle income countries. For example,
already some valuable monoclonal antibodies have been developed that improve survival in cancers which express the relevant target molecule. However, such agents are prohibitively expensive
for all but the wealthy in developing countries, and some of the presently available agents prolong
life for only a matter of weeks to months. The high cost of such drugs while protected by patents
is also a controversial issue in technologically advanced countries (it is justified by the manufacturers as necessary to recoup the cost of research required to develop new agents, including the
many discarded because of minimal or no activity). In fact a high proportion of research throughout the world (in some high income countries, as much as 70 per cent, and in developing
countries, more) is directed to drug development. And while this can result in real, if relatively
small, degrees of progress, the problem of developing countries is primarily the lack of access to
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440
standard anticancer drugs (coupled to accurate diagnosis, staging, and care), rather than lack of
access to new agents.
Where resources for research are limited, national needs rather than basic research should be
emphasized (although basic research may realistically be accomplished in the context of international collaboration). Priority research projects should be drawn from a much broader research
agenda encompassing all aspects of prevention, early detection and treatment (including all treatment modalities) adapted to the local context, or designed to determine whether resources can be
spared in achieving a similar result. Research can address issues of diagnosis, staging, health service
structure, and access to care, some of which will come under the heading of operational research;
and can include surveys and situational analyses of topics such as attitudes and beliefs about
cancer, the reasons for late presentation in particular cancers or populations, and the reasons for
refusal of diagnostic tests or therapy. Such studies address the problems of the developing countries and can be rapidly translated into patient benefits. Clinical research can also be used as a focal
point for professional training and education including training in the collection of accurate data
(which requires good follow up) and quality assurance which should lead to more standardized
approaches to diagnosis and treatment and introduce the idea of monitoring the degree of adherence to a planned study as well as the evaluation of results. Surveys and other forms of assessment
can lead to the identification of potential deficiencies in health care delivery, including supportive
care, which can make the difference between survival and death as well as preclude the identification of risk factors for survival because of a high rate of toxic deaths [42]. In the longer term, such
studies result in the development of a foundation of evidence which can be built upon in a manner
appropriate to the locally available resources and lead to improved national and international
communication and learning from others who work in low-resource settings.
Finally, funding for research in developing countries is difficult to develop much of the research
in these countries is conducted by university staff from technologically advanced countries interested
in epidemiological or other studies that often have no associated patient benefit, or, as described, by
the pharmaceutical industry. To convince governments to invest in research, it is important that
health authorities recognize that research conducted now can bring dividends both immediately and
later, by increasing efficiency and knowledge. Civil society, both local and international, also has an
important role in funding research, as have international inter-institutional collaborations, possibly
as components of twinning or partnership programmes. Because of the sometimes unique research
opportunities in developing countries, it is in the interest of the global community to develop ways of
enhancing the infrastructure for research in these countries, and to develop research collaborations.
Good research, regardless of where it is done, results in progress.
Research ethics
Research involving human subjects can only be conducted in an ethical environment in which the
individual interests of the patient take precedence over those of society at large, and patients must
be given information about the risks and benefits of the research elements of any study they agree
to participate in. Clinical research in developing countries has special problems. Informed consent may be particularly difficult in a partially illiterate population with a limited, at best, understanding of cancer, and sometimes beliefs discordant with modern scientific medicine. However,
this cannot be used as a reason to limit research in such countries (or, worse, to fail to obtain
informed consent or assent), the argument being somewhat similar to the issue of research in
vulnerable populations. In this respect, the Helsinki Declaration [43] states, in principle 17:
Medical research involving a disadvantaged or vulnerable population or community is only justified
if the research is responsive to the health needs and priorities of this population or community and if
OVERCOMING DISCIPLINARY AND CULTURAL DIVIDES AND MOVING TOWARDS GLOBAL CANCER CONTROL
there is a reasonable likelihood that this population or community stands to benefit from the results of
the research.
Another issue is the increasing proportion of research reflecting the funding available that
is related to product development. The pharmaceutical industry is rightly interested in reducing
the cost of research and in bringing new drugs to the market as quickly as possible. Clearly, the
large numbers of patients potentially eligible for research studies in developing countries could
reduce the cost of such research. However, the most recent revision of the Declaration of Helsinki
states that research subjects should benefit from the results of research (article 33). While not
spelled out precisely, the implication, in conjunction with article 17, is that research should not
be done in populations that cannot benefit from it. This has implications for the pricing of drugs
in countries that participated in the development of a particular drug. Most new drugs cost many
times the annual salary of participants in low and middle income countries and sometimes,
even in high income countries. There is room here for creative pricing. For example, methods
could be developed to determine equivalent costs in different economies similar to the use of
purchasing power parity as a means of correcting GDP and other financial measures for differences in the cost of living in different countries. This is unlikely to be an issue when new drugs
provide only minor patient benefits, but could become so as more effective targeted therapies are
developed. Clearly, this is a complicated area and will require much thought and negotiation
between governments, international organizations, and the pharmaceutical industry.
The Helsinki Declaration also requires that new interventions are tested against the best current
proven intervention for the disease in question (principle 32) although it does not specify
whether this relates to the best available intervention in the context of the population from which
research subjects will be drawn, or to the best available intervention on a global basis. This leaves
open the complexities that may arise in determining the best therapy, which, in any event, may
not be available in the country in question. Clarification of this principle would help to avoid
inhibition of research that could greatly benefit the community. Apart from cost, the best available therapy in one country may not be optimal in another, for example, because of inadequate
supportive care for a potentially toxic regimen. Indeed, in this circumstance, the best available
therapy defined in technologically advanced settings, could result in a higher death rate and give
inferior results to less toxic regimens. It may be that the principle is intended to take local issues
into consideration, but this is not clearly stated presumably because the Declaration was revised
with technologically advanced countries in mind.
Overcoming disciplinary and cultural divides and

moving towards global cancer control
Cancer control (despite the broader definition used in this book) is often thought of as referring
to prevention and early diagnosis and primarily involving epidemiologists and public health
specialists. However, effective public education requires the active participation of care givers,
who also play a critical role in early detection. Moreover, early detection has no value unless treatment can be immediately instituted. Treatment (including palliative care) is an essential element
of cancer control in its own right and the only way of controlling some cancers. Effective cancer
control will entail collaboration among institutions and organizations, at both national and international levels, that have quite different cultures and often different goals, rendering effective
communication and concerted action more difficult. Such divides must be overcome, since each
element of the community has an important role to play. Supranational organizations provide
information, guidance, and support to national governments which are responsible for the
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442
creation of relevant legislation, determining and regulating the structure of the health care
system, and promoting (or endorsing) the creation and implementation of a national cancer
control strategy. Academic institutions and cancer centres offer education and training to health
professionals, while simultaneously providing health care and conducting the research needed to
create and expand the evidence on which effective action depends. Industry is ultimately responsible for the manufacture of all the equipment and drugs needed for cancer control, and has an
important role in the development of novel approaches and new technologies for diagnosis and
treatment. Finally, civil society provides advocacy, funding, and information and may play an
active role in professional and public education as well as participating directly in cancer control
activities. As such, it plays an important role in helping to provide a connecting matrix among the
range of involved institutions, for example in bringing silent disasters such as the increasing
cancer mortality rates to the attention of those who are able to help, striving to create, in the
process, a political climate of collective solidarity.
Overcoming the cultural divides that all too often separate countries and various elements
of the community is essential to improving the control of cancer in developing countries. The
term global cancer control is frequently used today, but often has limited resonance, since there
is little coordination at a genuine global level. A new trend, however, towards the development
of regional cancer control plans that is, plans that encompass each of the WHO regions could
create meaning to this term. Each region should have its own strategy based on the broad
principles of cancer control articulated by WHO in Geneva, along with the efforts of other UN
organizations, such as International Atomic Energy Agency (IAEA) Programme of Action in
Cancer Treatment (PACT) [44], and civil society who can contribute by developing approaches
in specific areas of cancer control that can be simultaneously tested or used in multiple countries
at similar socio-economic levels. The regional approach can lead to much greater sharing of
information and is likely to lead to rapid progress. Eventually, exchanges between or among
regions will result in validation of the notion of global cancer control and in the process,
contributing to greater understanding and cooperation among countries throughout the entire
spectrum of development.
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Chapter 23
Strengthening the global community for

cancer control
Simon Sutcliffe, Mark Elwood1
The challenge
Cancer poses a major global health challenge incidence, mortality, and prevalence are rising
and will continue to do so with population growth and ageing, even though mortality rates in
developed countries are now falling [1,2]. In all countries, even the richest and best resourced,
evidence-based and carefully structured strategies are needed to extend effective cancer control
interventions, including cancer treatment. For low and middle income countries, reliance on high
cost solutions designed for other environments cannot be the way forward. So where is the light
at the end of this tunnel?
Should one contemplate that population-based cancer control should be based on different
principles for resource-challenged nations? Should there be different or lesser standards for
cancer control according to resource availability or priority?
We would argue against the premise of different principles for different peoples however,
it is only realistic to accept different practices and priorities to address common principles applied
within the context of different resource settings. We present some principles that underlie population cancer control in Table 23.1. They are based on premises that include an effective cancer
control plan as an integral component of a population health plan; that health is not the absence
of disease, but rather a resource for living the ability to realize aspirations and satisfy needs
whilst changing and adjusting to change within a constantly evolving environment [3]; that
improvements in cancer control derive through improvements to population development,
population health, as well as through cancer-specific interventions [4,5]; that chronic diseases are
the result of biological processes, driven by risk factors that have a commonality across diseases
(tobacco, alcohol, nutrition, obesity, exercise, environment, behaviour, and choice); that health
and the opportunity to be, and live, a healthy life is a human right not a discretionary response
to social inequity; that disease control needs a plan that is based in evidence, standards of practice
and care guidelines; and that differences of outcome across resource settings are much less based
on biological differences than on socio-political, educational, and economic variables.
Accordingly, we defend the principles of population-based cancer control for all, but recognize
that opportunities, priorities, and the real-life context will determine which policies and practices
are pursued with what vigour, when, and how, to fulfil these principles.
Simon B. Sutcliffe, MD, FRCP, FRCPC, FRCR Board Chair, Canadian Partnership Against Cancer,
Canada, and Past President, BC Cancer Agency, Vancouver; and J. Mark Elwood, MD, DSc, FRCPC,
FAFPHM, Vice-President, Family and Community Oncology, BC Cancer Agency, Vancouver, British
Columbia, Canada.
446
STRENGTHENING THE GLOBAL COMMUNITY FOR CANCER CONTROL
Table 23.1 Principles of a population-based cancer control plan

Meets defined needs of the population to be serviced
Comprehensive to the spectrum of cancer control
Equitable, fair, reliable, and safe
Mitigates disparities of process and outcome
Based in evidence for benefit
Explicit standards of practice and clinical care guidelines
Integrated and coordinated (within and across diseases, professional groups, and health sectors)
Evaluable, evaluated, and reported
Sustainable
Appropriately governed and managed
Do we know enough about cancer to enhance outcomes

across different resource settings?
What can be achieved in cancer control is a function of what is known and what is applied to the
population who can benefit. A great deal about cancer and cancer control is known, but as shown
in Chapter 5, some, but by no means all, of this knowledge has been successfully applied in some,
but by no means all, jurisdictions, to achieve reductions in mortality and improvements in quality
of life for those experiencing cancer.
Looking first at the strengths (what we know and what has been achieved), several major risk
factors have been identified, quantified, and, at least to some extent, controlled. The key issues in
cancer prevention are described by Colditz and Beers in Chapter 2 of this book as the control of nine
key factors: tobacco, alcohol, body weight, diet and dietary supplementation, sun exposure, infections, environmental and occupational exposures, and medications. These are concordant with the
prevention and screening goals of the European Code against Cancer [6], shown in Table 23.2.
Cancer shares many key risk factors with other chronic diseases. Dramatic reductions in cardiovascular mortality over the last 30 years have resulted from tobacco control, dietary interventions
(polyunsaturated versus saturated fats; vegetable oils rather than animal fat; and increased vegetable
to meat consumption), and the detection and control of increased blood pressure, blood glucose,
and blood lipids [711], while being absent in countries where risk factors have not improved [12].
Physical inactivity and obesity have been identified as important linked risk factors; however, interventions, especially at the population level, have been less successful. While similar large decreases
in total cancers have not been seen yet, smoking-related cancers in developed countries, particularly
in men, have decreased rapidly as a result of tobacco control through legislation, regulation, taxation, awareness, communication, and social policy [13], as discussed in Chapter 2.
Cancer prevention has moved far beyond the simplistic concept of informing people of the
hazards and expecting them to change their behaviour. Personal behaviour will change with the
societal and environmental milieu, as discussed by Hill and Dixon in Chapter 3, leading to their
Big Five principles of behaviour change: motivation, modelling, capacity, remembering, and
reinforcement.
DO WE KNOW ENOUGH ABOUT CANCER TO ENHANCE OUTCOMES ACROSS DIFFERENT RESOURCE SETTINGS?
Table 23.2 European Code against Cancer (http://www.cancercode.org/)

Many aspects of general health can be improved, and many cancer deaths prevented, if we adopt
healthier lifestyles:
1 Do not smoke; if you smoke, stop doing so. If you fail to stop, do not smoke in the presence of
non-smokers.
2 Avoid obesity.
3 Undertake some brisk, physical activity every day.
4 Increase your daily intake and variety of vegetables and fruits: eat at least five servings daily. Limit your
intake of foods containing fats from animal sources.
5 If you drink alcohol, whether beer, wine, or spirits, moderate your consumption to two drinks per day
if you are a man or one drink per day if you are a woman.
6 Care must be taken to avoid excessive sun exposure. It is specifically important to protect children and
adolescents. For individuals who have a tendency to burn in the sun active protective measures must
be taken throughout life.
7 Apply strictly regulations aimed at preventing any exposure to known cancer-causing substances.
Follow all health and safety instructions on substances which may cause cancer. Follow advice
of National Radiation Protection Offices.
There are public health programmes that could prevent cancers developing or increase the probability
that a cancer may be cured:
8 Women from 25 years of age should participate in cervical screening. This should be within programmes
with quality control proceduresa.
9 Women from 50 years of age should participate in breast screening. This should be within programmes
with quality control proceduresa.
10 Men and women from 50 years of age should participate in colorectal screening. This should be within
programmes with built-in quality assurance procedures.
11 Participate in vaccination programmes against hepatitis B virus and human papilloma virus b ,
if available.
From: Third version [38], from Annals of Oncology 14: 9731005, 2003, with permission of Oxford University Press.
Slightly modified as shown:
aOriginal
version refers to specific European quality control guidelines.
bOriginal
version prepared in 2003: HPV added.
The impact of new knowledge on cancer causation is perhaps best shown by social trends
in developed countries: from being an accepted behaviour of the majority, smoking is now
a minority exposure and unacceptable in most social situations, workplaces, and even in recreational settings like bars and restaurants. Sun protection is an expected part of school programmes
and even the architectural design of public areas in high risk regions. Almost everyone knows they
should be active, eat well, and control their weight, even if the practice is harder than the intent.
To question if a chemical is carcinogenic is a normal expectation rather than a rare situation.
Indeed, anxiety about cancer risk can go too far, with perhaps unnecessary concern about many
common exposures, from baby bottles to cell phones. In parallel with ongoing good research into
potential hazards, better understanding and communication of the concept of risk and informed
choice is needed [14]. Prevention also depends on new technologies and their application, as
shown by the progress on immunization to reduce liver, cervical, and other cancers, as discussed
in Chapter 6.
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448
Are advances in diagnosis and treatment taking place?

Cancer mortality rates have been falling at about 1 per cent per year for adults over the past two
decades in the developed world [15]. These trends show the success of prevention, early detection,
and treatment. Early detection, including screening programmes, has certainly had a major effect
on cervix and breast cancer, as discussed in Chapter 4, and earlier clinical detection has probably
had a substantial effect on survival improvements in several other cancers.
One measure of improvements in care is increases in the 5-year relative survival rates, as
discussed in Chapter 18. A long term perspective is shown by US data for patients diagnosed
in 1999 to 2005 compared with fifty years earlier, 1950 to 54 (Figure 23.1). While this comparison
is open to the problems of changes in diagnostic criteria and in data collection methods, it illustrates the huge improvement, with the all-cancer survival rate doubling from 35 to 69 per cent,
and the survival in children with cancer increasing even further, from 20 to 82 per cent. So on this
benchmark, survival rather than death has become the normative expectation. For individual
All Sites
Thyroid
Melanoma of the skin
Hodgkin lymphoma
1999-2005
Urinary bladder
1950-54
Non-Hodgkin lymphoma
Kidney and renal pelvis
Colon
Oral cavity and pharynx
Ovary
Brain and nervous system
Esophagus
Liver and intrahepatic bile duct
20
40
60
80
100
Fig. 23.1 Long term trends in cancer survival. 5-year relative survival, US whites, for patients
diagnosed in 1950 to 1954 and in 1999 to 2005.
Source: Data from the US SEER system: http://seer.cancer.gov/csr/1975_2006/browse_csr.
php?section=1&page=sect_01_table.03.html.
IS CANCER CARE IMPROVING?
100
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Vertical bars are 95 per cent confidence intervals; P values test equality over the three time periods.
Source: Reprinted from (39), Steliatrova-Foucher et al., The Lancet, 364, 20972105, Copyright
2004, with permission from Elsevier.
cancer sites, the improvements have been generally very large, although the lack of progress for
cancers of the lung, oesophagus, liver, and pancreas stands out.
The continuing gains in outcomes from advances in treatment for paediatric cancers is
further shown by European data showing major improvements from the 1970s to the 1990s [16]
(Figure 23.2). Undoubtedly, these are related to the high proportion of children with cancer who
are treated in randomized trials or with evidence-based protocols and multidisciplinary teams a
much higher proportion than in adult cancers [17].
Medical imaging and pathology are both undergoing a transition from spatial and morphologic
disciplines to integrated anatomic and functional modalities that impact upon predisposition,
diagnosis, prognosis, and therapy selection in real time. Molecular pathology (including biomarkers, micro-arrays, bio-banks, cytogenetics, and genomics) and advanced imaging (including
functional imaging, co-registered images, image-guided interventions, and minimally invasive
procedures) represent a shift from organ- and tissue-based practice to cellular- and molecularbased practice, with attendant implications for predictive, prognostic and personalized
medicine.
Surgery, radiation, and systemic therapy have all benefited by attention to quality and safety
measures (for example, check-lists, standards of practice, practice guidelines, information
management and technology, safety and quality protocols, and process review and improvement)
as well as specific technical and procedural advances, for example, in surgery, minimally invasive
surgery, robotics, and pre- and post-care enhancements; in radiation therapy, technical precision,
target definition and verification, image co-registration for beam localization, and interstitial
techniques; and in systemic therapy, individually targeted therapies; protocols and pre-printed
orders, pharmacy quality control, prescribing, and dispensing practices.
Is cancer care improving?

Just as important as, and in synergy with, advances in specific cancer therapies, have been
improvements to the quality of care, discussed in Chapters 7 to 14. These are many: management
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450
by interdisciplinary teams; the development and adoption of evidence-based clinical practice

guidelines; the definition and application of explicit standards of care associated with indicators
and measures of performance; improved symptom control and pain management; expanded care
models integrating community and facility-centred interventions; alternative service delivery
models such as patient navigation and community nurse triage; increased enrolment in clinical
trials, thereby increasing standardized care, therapeutic innovation and novel interventions in
an ethical, evidence-based context; and an enhanced awareness of support, palliation, and
survivorship considerations as fundamental requirements for compassion, dignity, comfort,
and functionality [1820].
Future progress
If all these improvements are real and evident, what is the problem? The difficulties are
three-fold:
The knowledge gain is not fast enough to offset the incidence and mortality consequences
of an increasing and ageing population.
The knowledge is not being transferred into application at a population level at an appropriate
rate or with equitable uptake and distribution.
The ability to access and implement valid knowledge about improving cancer control is
unequal the opportunities benefit the 10 per cent (the resource rich) rather than the
90 per cent (resource challenged) of the worlds population.
So on the one hand, there is knowledge, light in the tunnel; on the other, we are far from
maximizing the benefits of that light, and making it available to everyone.
How might we mitigate unequal opportunities to benefit? Within developed countries,
mal-distribution of the benefits reflects inequities in education and general socio-economic
circumstances which impact how health services are used; inequities in the provision of health
services, including those resulting from decisions about resource allocation, for example, between
preventive, curative, and supportive services, and often, simply poorly designed and poorly
managed services that are inefficient. Internationally, for lower resource countries, the solutions
have to come from within, but with assistance from without, as has been shown by the successes
against communicable diseases such as polio, smallpox, trachoma, and river blindness. In essence,
in both developed and developing countries, collaboration and partnership are necessary not
just at the level of sharing information, protocols, guidelines, manuals, etc. but collaborations
based on a commitment to achieve mutually defined goals through establishment of joint, and
jointly-resourced, capacity.
Looking now at the challenges and the opportunities of

population-based cancer control, what are the directions to
be pursued within the context of reality and collaborative
relationships?
We suggest a number of key issues for current and future attention:
The establishment and direction of a population-based health/illness/cancer control plan in

each country or jurisdiction. The plan is about what should be done, how, by whom, and
when; it is about a change in function, enabled by structural considerations, that adds value
to the existing contributions of the health system and renders the system more effective
through direction, integration, coordination, and internal and external collaboration.
THE CONTRIBUTION OF INTERNATIONAL STRATEGIC APPROACHES
Attention to leadership, followership, and sustained commitment. A plan to address incidence, prevalence, quality of life, and mortality of cancer, of necessity, requires a coalition of
partners or stakeholders. Government commitment is necessary, but not sufficient. A successful endeavour requires full engagement of funder, provider, and beneficiary ownership
of the plan by civil society, on behalf of civil society.
Identification and establishment of funding alliances collaboration and direction of funds

to achieve cancer control (or wider disease control) goals. The needs of a population-based
plan encompasses clinical service, research, and education (capacity, quality, and performance); capital and operating resources; inter-institutional and national linkages; and international collaborations, partnerships, and alliances. Plans that address population need
go beyond institutional and regional/national geographic boundaries. Collaboration to
enhance population outcomes will need collaborations of funders to achieve those goals
governments, charities and foundations, private sector, industry, and public philanthropy.
Establishment of methods for measuring, monitoring, evaluating, and reporting process and
outcome, from public and privately funded interventions, both within the population-based
programme and relative to contextually relevant external comparators.
The definition of targets, deliverables, and collaborations/partnerships. These relate to both

the execution of the plan as well as the expected impact of the plan on longer-term population
outcomes, including incidence, mortality, prevalence, quality of life, and economic indicators.
Collaborations and partnerships may encompass system integration and coordination,
research alignment with practice, relationships within cancer control, and relationships
between non-communicable diseases and cancer, as elements of an integrated risk factor
control and chronic disease management strategy.
Clarification and communication of the compelling reasons for investment in a cancer control
(chronic disease) plan and the anticipated return on investment from health outcome,
societal, and economic perspectives. Context will be particularly relevant with respect
to returns within cancer control, across diseases/health states, and relative to other expenditures for public services.
A principled and flexible approach to addressing the mismatch between need for service and
capacity to deliver service. Elements for consideration include alternative service delivery
models, for example, medical or public/population health models for service delivery [21],
nurse triage and navigation, integrated early detection and health awareness programmes,
home-based palliative care linked to education and community-based interventions; the use of
technology to address issues of distance, critical mass, expertise, education, and mentorship;
and socially responsible recruitment, training, and human resource development practices and
policies to advance capacity and capability in more resource-challenged environments.
The contribution of international strategic approaches

Over the past decade, valuable global strategies to prevent and control non-communicable
diseases have been produced by the World Health Organization, being the international body
of government health agencies, building their four pillars of cancer control [22] (see Table 23.3).
In parallel, the International Union against Cancer (UICC), as the international linkage of
non-government bodies, has given us the World Cancer Declaration [23] (Table 23.4).
Several other key WHO documents (some described in Chapter 21) include Preventing chronic
disease: a vital investment [24]; Global action against cancer [25]; Closing the gap in a generation:
health equity through action on the social determinants of health [26]; the Framework Convention
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452
Table 23.3 The World Health Organizations four pillars of cancer control
Prevent those cancers that can be prevented
Treat those cancers that can be treated
Cure those cancers that can be cured
Palliate whenever palliation is needed
From: [22].
on Tobacco Control [27]; Primary health care now more than ever [28]; Diet, physical activity,
and health [29]; and the World Cancer Report [22]. The reports on Food, nutrition, physical
activity and the prevention of cancer [30], and Policy and action for cancer prevention [31] from
the World Cancer Research Fund and the American Institute for Cancer Research are also very
valuable. Amongst many others are the International Atomic Energy Agencys building partnerships to fight the cancer epidemic [32]. Also, the strategic documents of national organizations
such as the American Cancer Society and the British National Health Service are of great value
to other countries, for example The Cancer Atlas 2006 [33], which had input from many organizations. The US Institute of Medicine report on cancer control in low and middle income
countries [34] is also valuable. All these have shaped the definition of the cancer-chronic disease
burden and the directions for response.
Table 23.4 Targets for cancer control to 2020, set by the International Union Against Cancer, linked
to the World Cancer Declaration, 2008
Sustainable delivery systems will be in place to ensure that effective cancer control programmes are
available in all countries.
The measurement of the global cancer burden and the impact of cancer control interventions will have
improved significantly.
Global tobacco consumption, obesity, and alcohol intake levels will have fallen significantly.
Populations in the areas affected by HPV and HBV will be covered by universal vaccination
programmes.
Public attitude towards cancer will improve and damaging myths and misconceptions about the
disease will be dispelled.
Many more cancers will be diagnosed when still localized through the provision of screening and early
detection programmes and high levels of public and professional awareness about important cancer
warning signs.
Access to accurate cancer diagnosis, appropriate cancer treatments, supportive care, rehabilitation
services, and palliative care will have improved for all patients worldwide.
Effective pain control measures will be available universally to all cancer patients in pain.
The number of training opportunities available for health professionals in different aspects of cancer
control will have improved significantly.
Emigration of health workers with specialist training in cancer control will have reduced dramatically.
There will be major improvements in cancer survival rates in all countries.
From: [23]
THE FUTURE
There are many valuable websites with international relevance, including those of governments
and major international organizations, easy to find by search engines. Some perhaps less obvious
ones include:
1 European Union cancer activities http://ec.europa.eu/health-eu/health_problems/cancer/
index_en.htm
2 Canadian Partnership Against Cancer http://www.partnershipagainstcancer.ca/index.html
3 Cancer Control P.L.A.N.E.T. (Plan, Link, Act Network with Evidence-based Tools) http://
cancercontrolplanet.cancer.gov/
4 NCRI ONIX National Cancer Research Institute Oncology Information Exchange http://
www.ncri-onix.org.uk
5 OERC-MERLOT Open Educational Resources for Cancer Multimedia Educational
Resource for Learning and Online Teaching http://voices.merlot.org/group/oercancer
6 International Observatory on End of Life Care http://www.eolc-observatory.net/
The International Cancer Control Congresses (the third was held in Cernobbio, Italy, in 2009)
have been influential in promoting international links on cancer control issues, and indeed in
stimulating the writing of this book (http://www.meet-ics.com/cancercontrol2009/).
Research has always been in essence international and collaborative, largely due to the ethical
scientific imperative of publishing results openly. Having comparable world-wide data on cancer
incidence is now accepted as routine, but this needed a great deal of effort, starting in the 1950s,
to establish standards for cancer registries to give world-wide data on cancer incidence; Cancer
Incidence in Five Continents is now in its ninth edition, the first being in 1966 [35]. Now we are
moving towards having world-wide data on cancer survival, which has already shown great value
[36,37]. Large scale international collaborative clinical trials, and also large epidemiological
studies, have been of immense value in advancing cancer knowledge. The logistic requirements
for clinical trials to assess important but modest improvements in treatment, and to assess the
effectiveness of screening and preventive interventions, are huge and challenging; the era of the
single-centre study is all but gone, except for hypothesis-generating and preliminary studies, and
in many cancer areas even single country studies are likely to be too limited. Yet getting support
for such work is a major challenge. While much research is funded, there is as yet little progress
on the best strategy for research how do we get maximum value out of research investments,
how do we answer key questions in good time, when can we decide that some questions need
action, not more research?
The future
Much progress has been made. But more can be achieved not by establishing more organizations, but by enhancing the effectiveness of existing organizations, by leveraging the capacity
to collaborate at strategic, operational, and resource development levels through relationships
between nations (alliances), organizations (twinning), teams (interdisciplinary work), and individual leaders. Whilst intuitively sensible and conceptually simple, collaboration is easily impeded
by the weaknesses and challenges of leading, resourcing, and sustaining change within diverse
health systems over protracted time.
The burden of cancer is great and the task of cancer control daunting. Recognition that
cancer is a process with many elements amenable to interventions from health to end-of-life,
and that there are many precedents for meaningful, favourable change within each of the
elements, provides encouragement and incentive to achieve more. Achieving more necessitates
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454
a broader collaboration amongst partners at policy, health service, and civil society levels the
strengthening of the global communities of practice and a renewed understanding of the relationships and resourcing necessary to effect the common purpose in advancing global cancer
control.
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Index
Locators for headings which also have subheadings refer to general aspects of the topic
Locators in bold refer to major content
Locators in italic refer to gures/tables
abdominal fatness 349; see also weight control
ACB (Alberta Cancer Board) 322
ACCCC (Alberta Coordinating Council for Cancer
Control) 322
acronyms listing 340
active prevention see prevention, active
acupuncture 244, 247
age/aging populations, and burden of cancer 5, 6, 10,
14, 15
age-standardized relative survival 353, 354
air pollution 34
Alberta Cancer Board (ACB) 322
Alberta Coordinating Council for Cancer Control
(ACCCC) 322
alcohol use 2930, 350, 410, 446, 447
Alma Ata Declaration 409, 410
alternative medicine, denition 240; see also CAM
(complementary and alternative technology)
American Cancer Society 347, 452
American Institute for Cancer Research 452
anal cancer 120; see also colorectal cancer
analgesic ladder 262, 2645
anxiety, cancer survivors 21516
appeals, drug access/equity 3845
application of new research 812, 84, 85, 97, 450;
see also clinical trials; evidence based approach;
research; science
cancer control and science 824
context, role of 936
diffusion/dissemination of information 8491
evidence based approach adaptation 946, 95
knowledge to action framework 89, 90
practitioner/policymaker needs 913
art therapy 2456
aspirin 35
assessment tools, quality of life (QOL) 2258
Australia; see also optimal treatment model
causes of death 7
economic impacts 11, 200
hospice movement 269, 270
indications for treatment 1701, 171
programme budgeting and marginal analysis 3745
radiotherapy provision 170, 174, 1778, 17980
skin cancer 5, 36
survival after diagnosis 10, 351, 352
awareness campaigns 302
baby boom generation 185
behavioural changes see big ve principles; cancerrelated behaviour
behavioural reinforcement 4951, 56, 446
behavioural risk factors see risk factors; see also specic
risk factors by name
Best Practice school-based approach 313

beta-carotene 32
BETTER model 233
bevacizumab 186
big ve principles of cancer-related behaviour 43, 44,
45, 446; see also cancer-related behaviour
application examples 546
capacity for change 479, 545
implications 512
modelling 47, 54
motivation 457, 54
reinforcement 4951, 56
remembering 49, 56
biologically-based therapies 240, 246; see also CAM
biomarkers 2023
biomass stoves 34
biomedical model 242
bio-psychosocial model see psychosocial model
bladder cancer 420
blogs, public engagement in cancer control 31011
blood tests, prostate cancer 5
body-based practices 240, 246; see also CAM
brain tumours 134, 448
breast cancer 38, 74; see also mammography
chemotherapy drugs 356, 186
distribution, worldwide 348, 34950
economic impacts 13
hormone therapy 345
Improving Outcomes Guidance Reports 134
incidence/mortality rates 74, 356, 420, 421
objective capacity for change 48
radiotherapy utilization 17980
Reach to Recovery 21213
risk factors 31, 350, 410
social support 14
specialist treatment units 134
survival rates 132, 133, 350, 352
United States/Canada 701
breast screening 64, 67, 6971, 74, 4334
breast self-examination (BSE) 70
Brief Pain Inventory (BPI)
Bristol Cancer Help Centre 243
British Columbia Cancer Agency (BCCA) 188, 3223
burden of cancer; see also cost of cancer
and cancer control 1416
disability-adjusted life years 1011
incidence/mortality rates 57
measures 414, 9
and outcomes 810, 3445
and population age 15
prevalence 78
458
INDEX
CA125 blood tests 74

calcium 26
California Comprehensive Tobacco Control
Program 26
Calman-Hine Report (1995) 1334, 135, 143
CAM (complementary and alternative technology)
239, 2501
biopsychosocial model 2423
costs associated 242
denitions 23940
education of health care
professionals 2489
evidence-base 2447, 2457, 249
historical contexts 2424
modalities 241
new paradigms for cancer control 2479
patients as partners 243
policy shifts 244
reasons for using 2412
redening cancer care 24950
relevance to cancer control 2402
research paradigms 248
users 241
Campaign to Control Cancer 297
Canada; see also cost of new medicines; public
engagement in cancer control
action priorities/strategy implementation 324
authority of national/provincial cancer
organizations 330
breast cancer 70
CAM (complementary and alternative
technology) 249
cancer research investment 83, 84
causes of death 7
cervical screening 64
community forums 305
continuum of cancer control 329
dedicated versus general approaches 324
governing models 326, 32631, 327
incidence/rates of cancer 5, 6, 351, 352
levers of changes/improvements 3335
organizational structures 318, 319, 3213
palliative/supportive care 2623
Pallium Project 267
population age and burden of cancer 14
powers invested in Department/Ministry of
health 331
programme budgeting and marginal analysis 375
radiotherapy provision 16970
St. Boniface General Hospital 268
Canadian Breast screening trial 68
Canadian Cancer Society (CCS) 322
Canadian National Breast Screening Study
(CNBSS) 69
Canadian Partnership Against Cancer
(CPAC) 1568, 157, 319
Canadian Strategy for Cancer Control
(CSCC) 300, 319, 323
Cancer 2000 Report (Canada) 319
Cancer Action Teams 136
Cancer Atlas 2006 452
cancer care 3, 4, 318
and CAM (complementary and alternative
technology) 24950
improvements 44950
and survival 3504
Cancer Care Nova Scotia (CCNS) 3212
Cancer Care Ontario 321
Cancer Care Ontario Program in Evidence-based Care
(PEBC) 15861, 159, 162
Cancer Connect 213
cancer control 318; see also ethics and cancer control;
global cancer control; population-based cancer
control systems
and burden of cancer 1416
consequences 405
denition 3, 4, 153, 260, 260
developing countries 4256
new paradigms 2479
palliative/supportive care 2602, 2701
programme development 131, 1489
and science 824
strategies 437
targets 452
Cancer Council Helpline 213
Cancer Guidelines Action Group
(CGAG) 1568, 157; see also guidelines
Cancer Gold Standard 313
cancer guides 249
Cancer Incidence in Five Continents 453; see also
incidence
Cancer Information and Support Centres
(CISC) 214; see also information systems
Cancer Prevention and Control Research Network
(CPCRN) 946, 95; see also networks
Cancer Programme Board 137
Cancer Quality Council of Ontario (CQCO) 321
cancer reform strategy (CRS) 14850
cancer registries 3427, 343, 357, 428, 453; see also
information systems
cancer-related behaviour 434, 512, 59; see also
big ve principles
evaluation/monitoring 578
individual focus 45
mass media 57
organizational model 59
problem-specic conceptual model 523, 53
research centre examples 59
targeting interventions 53, 57
Cancer Research Funders Forum 147
Cancer Research UK 146
cancer services; see also health care systems
English approach to improvements 134, 1345
needs/delivery mismatches 451
priority setting 367, 368
progress from 2000-2005 1379, 138
radiotherapy planning 1778
Cancer Services Collaborative 136, 1412, 144
Cancer Society of New Zealand 323
cancer staging see stage at diagnosis
cancer survivors see survivors
Cancer Taskforce 137
cancer treatment see treatment
capacity for change 479, 545, 157, 446
CAPCE (comprehensive advanced palliative care
education programme) 268
carcinogenesis as process 279, 280, 281, 283, 291
carcinogens 34, 447
INDEX
cardiovascular disease 410; see also non-communicable

diseases
Care Quality Commission 137
Caregiver Quality of Life Index - Cancer
(CQOLC) 227; see also families/carers
causality/causation of cancer 101
infections 102, 1079, 107, 108
model 402, 4024
CCNS (Cancer Care Nova Scotia) 3212
CCS (Canadian Cancer Society) 322
Center for Disease Control (CDC), United States 26
centralization of authority 3256
CEO Cancer Gold Standard 313
CEO Roundtable on Cancer 313
Cervarix 121
cervical cancer 26, 104, 105, 348, 350, 420; see also
HPV
cervical screening 64, 67, 712, 140, 433; see also HPV
post-vaccination 11617
reinforcement 50
screening options 118
stafng 66
CGAG (Cancer Guidelines Action Group) 1568, 157
change, capacity for 479, 545, 157, 446
chaplains 232
charities, role 1467; see also volunteer services 215
chemoprevention 356
chemotherapy drugs 1856, 4367; see also cost of new
medicines; medication
children of parents with cancer 216
children with cancer 134, 40910
China 34
cigarette smoking see tobacco smoking
CISC (Cancer Information and
Support Centres) 214
classication, pathological see stage at diagnosis
clinical practice guidelines see guidelines
clinical trials 68, 112, 11214, 247; see also evidencebased approach
CNBSS (Canadian National Breast Screening
Study) 69
Co-Can CPG 1635, 164
coenzyme Q10 246
collaboration 3878, 4534
co-location models 59
colorectal cancer 26; see also gastrointestinal tumours
aspirin 35
radiotherapy utilization shortfalls 17980
risk factors, modiable 32, 36
screening/early diagnosis 67, 71, 140
survival 133, 350, 3512, 448
vitamin D 323
Commission for Health Improvement 136
communities of practice (COPs) 97
community forums 3035
community support 205, 217; see also palliative/
supportive care
broader context of support 2078
children of parents with cancer 216

clinical setting 206
clinical setting challenges 2067
community settings 2078
dimensions of information/support provision 209
drop-in centres 214
educational programmes 20910
effectiveness of psychosocial care 206
group support programmes 212
internet/online support 21314
needs of cancer survivors 21516
one to one support 21213
peer support programmes 21112, 213
support for families/carers 216
supportive care intervention model 209
telephone help lines 21011
telephone-based peer support 213
unmet needs/psychosocial distress 2056
volunteer services 215
complementary and alternative technology see CAM
comprehensive advanced palliative care education
programme (CAPCE) 268
computers, and behavioural changes 49; see also
websites
CONCORD study 8, 10, 350
COPs (communities of practice) 97
Consortium of Academic Health Centers for
Integrative Medicine 249
continuity enhancements 288, 290
continuum of engagement 297
core services see cancer services; health
care systems
cost of cancer 1114; see also burden of cancer;
investment
direct health care costs 1314
and ethics 3737, 376
paying for treatment 4378
priority setting 3635, 365, 366, 36770
and quality of life 232, 370, 371
cost of new medicines (refers to Canada unless
otherwise stated) 146, 1545; see also
chemotherapy drugs; medication
Australia 200
British Columbia example 18892, 189, 190, 191
communication/education 195
current drug regulatory processes 198
developments in drug review 1989
drug coverage in Canada 1878
drug management cycle 194
drug systematic review, British Columbia 192,
1925, 194
drug utilization management 2012
evidence-based clinical guidelines, need for 201
monitoring/compliance with protocols 1967
New Zealand 200
opportunities/challenges 1856
optimisation of purchase contracts 1956
population-based outcome analysis 197, 1978
prognostic markers 2023
scale of problem 187
technology reviews 201
United Kingdom 199200
cost-per QALY league tables 370, 371
459
460
INDEX
CPAC (Canadian Partnership Against Cancer) 1568,

157, 319
counselling 232
CQCO (Cancer Quality Council of Ontario) 321
CRS (cancer reform strategy) 14850
CSCC (Canadian Strategy for Cancer Control) 300,
319, 323
cultural factors 44, 442
cure 8, 353; see also survival
DALYs (disability adjusted life years) 1011, 364,
3745
dance therapy 245
Datamart 196
death/dying, attitudes to 261
decentralization of authority 3256
decision trees 171, 1712, 172, 173
demand modelling 172
demographic indicators 346
Department of Health Cancer Policy Team 139
depression, cancer survivors 21516
detectable pre-clinical phase (DPCP), natural
history 68
developing countries 403, 41718, 426, 4412
assessing the problem 4267
cancer control approaches 4256, 437
cancer registration 428
chemotherapy drugs 4367
diagnosis of cancer 434
diet 430
early detection/screening 4324
horizontal/vertical approaches 4312
HPV vaccine 4301
incidence/pattern of cancer 280, 41821, 419,
420, 421
morphine 265
palliative care 268, 271, 4389
paying for treatment 4378
prevention strategies 4289
priority setting 4278
research 43941
resource limitations 4215, 422
tobacco control 429, 430
treatment 4346
diagnosis of cancer; see also early diagnosis; screening
advances 4489
and quality of life 228
dialogues, stakeholder see stakeholder dialogues
diet 244, 430, 446, 447
active prevention 313
ve-a-day message 32, 489
public engagement in cancer control 31213
subjective capacity for change 489
Diet, Physical Activity and Health (DPAS) 407, 408,
452
dietary supplements 313, 446
disability adjusted life years (DALYs) 1011, 364,
3745
dissemination of information 8491
distribution of cancer, worldwide 34750, 41821,
347, 419, 420, 421
doctors see health care professionals
DPAS (Diet, Physical Activity and

Health) 407, 408, 452
DPCP (detectable pre-clinical phase), natural
history 68
drop-in centres 214
drugs see chemotherapy drugs; cost of new medicines;
medication
dying/death, attitudes to 261
early diagnosis; see also screening
denition 63
EBA see evidence based approach
EBV (Epstein Barr virus) 33, 102
ecological view of chronic disease care 411, 412
economic impacts see cost of cancer; cost of new
medicines
Edmonton symptom assessment system (ESAS) 225
education
cancer sufferers 20910
funding 142
health care professionals 64, 2489, 2678
efciency enhancements, cancer control
systems 28891, 290, 291
EFPEC (educating future physicians in end-of-life
care) 267
ELDCARE project 353
emotional needs/well-being 21516, 231, 243
end of life care 229, 262
end-of-life nursing education consortium
(ELNEC) 268
endorphins 50
endoscopy 66
energy medicine 240, 246
engagement, ladder of 297; see also public engagement
in cancer control
England and Wales; see also National Health Service;
UK
organizations 330
centralization vs. decentralization of authority 325
levers of changes/improvements to cancer
services 3335
National Institute for Clinical Excellence
(NICE) 369
organizational structures for cancer control 318, 320
health 331
environmental risk factors 34, 346, 446; see also risk
factors and see specic risk factors by name
environmental scan 160
EORTC QLQ-C30/C15 (European Organization for
Research and Treatment of Cancer) 226
epidemiological data 36; see also incidence rates;
mortality rates; prevalence; survival
data quality 176
decision trees 171
outcome indicators 346
population age 5, 6, 10, 14, 15
population growth 5, 6
INDEX
Epstein Barr virus (EBV) 33, 102

equity, health 3913, 4034, 450; see also
socio-economic status
ethics of access 38990
population-based systems 283
reforms, WHO 405
erlotinib 186
ERSPC (European Randomized Study of Prostate
Cancer) screening 73
ESAS (Edmonton symptom assessment system) 225
ethics 3819, 395
appeals 3845
collaboration 3878
and economics 3737, 376
equity, health 3913
equity of access 38990
evidence-base 386
fairness 3901
inclusiveness 3824
limitations 388
personal liberty 3945
privacy 3934
private interests 391
procedural 3828
research 4401
social values 386, 3889, 389
stability/reviewability 384
substantive directions 3889
timeliness/efciency 3867
transparency 3856
EUROCARE programme 132, 133, 135, 350
Europe 350, 351, 352, 353; see also individual countries
by name
European code against cancer 447
European cooperation project (Co-Can CPG) 1635,
164
European Organization for Research and Treatment of
Cancer (EORTC QLQ-C30/C15) 226
European Randomized Study of Prostate Cancer
(ERSPC) screening 73
evaluation/monitoring see outcome evaluation 451
evidence based approach (EBA) 946, 95; see also
application of new research; clinical trials;
research; science
behaviour changes 46
CAM 2447, 2457, 249
and cost of new medicines 201
ethics 386
screening/early diagnosis 668
evidence
exercise see physical activity
existential domain 232
expectancy-value theory 46
expectations of cancer care 1534
expert advice 299, 300
external beam radiotherapy 176
external reviews, optimal treatment model 175
FACIT-Pal 226
FACT-G (functional assessment of cancer
therapy) 226
faecal occult blood test (FOBT) 71; see also colorectal
cancer
fairness see equity

families/carers, support for 216, 227
family well-being domain 2312
fatalism 299, 424
fats, dietary 312; see also diet; weight control
FCTC (Framework Convention on Tobacco
Control) 407, 4512
Federation of the Comprehensive Regional Cancer
Centres (FNCLCC) 161, 162
bre, dietary 32
nancial issues see cost
Finland 70
scal mechanisms 4089
ve-a-day message 32, 489
FNCLCC (Federation of the Comprehensive Regional
Cancer Centres) 161, 162
FOBT (faecal occult blood test) 71; see also colorectal
cancer
focus groups 3023
formative evaluation, cancer-related behaviour 58
four pillars of cancer control 452
Framework Convention on Tobacco Control
(FCTC) 407, 4512
France
organizations 330
centralization vs. decentralization of authority 325
services 3335
organizational structures for cancer control 318, 320
health 331
Standards, Options: Recommendations
programme 1613
functional assessment of cancer therapy
(FACT-G) 226
funding
alliances 451
training initiatives 142
future objectives 450, 4534
gall bladder cancer 17980
gap theory 222, 224
Gardasil 121
gastrointestinal tumours 8, 134, 410; see also colorectal
cancer; stomach cancer
GDP (Gross Domestic Product); see also developing
countries
and burden of cancer 347, 347
developing countries 417, 4213, 422
mortality rates 355
survival/cancer care 353
genetics 38, 2023
Germany 351
global cancer control 4412, 446; see also outcome
evaluation; population-based cancer control systems
challenges 445
distribution 34750, 41821, 347, 419, 420, 421
international strategic approaches 4513
organizational structures 31819
461
462
INDEX
Global Youth Tobacco Survey (GYTS) 349

GLOBOCAN 348, 357
governing cancer control reforms
authority of cancer organizations 330
centralization vs. decentralization 3256
levers of change 3312, 3335
models 32631, 327
organizational structures 3246
health 331
group communication 312
group support programmes 212
guidance
guided imagery 245
guidelines, cancer control 141, 153, 155, 1635; see
also Cancer Guidelines Action Group
adaptation of 158
Canadian Partnership Against Cancer 1568
Cancer Care Ontario Program in Evidence-based
Care 15861, 159
cancer guidelines system 155
cost of new medicines 1545
denition 153, 154
European cooperation 1635, 164
expectations 1534
ongoing initiatives in industrialized
countries 1556
Standards, Options: Recommendations
programme 1613
systems perspective 155, 1623
treatment 178, 181, 2934
guides, cancer patient 249
Gold Standards, Cancer 313
gynaecological cancers 134
GYTS (Global Youth Tobacco Survey) 349
haematological cancers 134
HC (human capital) assessment 12, 13
HDI (Human Development Index) 16
head/neck cancer 120, 134
health care professionals
education of 64, 2489, 2678
nurses role in screening 656
research science application 913
health care systems; see also cancer services
priority setting 367, 368
reforms, WHO 406
requirements 318
health expenditure, developing countries 422;
see also cost
health improvement/promotion/maintenance 3,
4069; see also prevention
height, and breast cancer 350
Heliobacter pylori 33, 102
help lines 21011
Helsinki Declaration 4401
hepatitis B virus (HBV) 26, 33, 1014, 102, 103; see
also liver cancer
Herceptin 186
HHV (human herpes virus) 33
high-risk approach to prevention 367
HIV (human immunodeciency virus) 33, 102, 431
holism 243; see also CAM (complementary and

alternative technology)
hormones, and breast cancer 345, 38
hospice movement 259, 2612, 2689; see also
palliative/supportive care
How-To-Guides 316
HPV (human papilloma virus) 26, 33, 102, 1034, 122;
see also cervical cancer; cervical screening
anal cancer 120
causality, cervical cancer 107, 1079, 108
epidemiology 1046, 105
head/neck cancer 120
natural history/progression to cervical cancer 106
penile cancer 119
vaginal/vulval cancers 11819
HPV vaccination 10910, 10910
in developing countries 4301
development of 11011, 111
efcacy, clinical trials 112, 11214
future developments 1201
inplementation 11416
second generation vaccines 121
human capital (HC) assessment 12, 13
Human Development Index (HDI) 16
human herpes virus (HHV) 33
human immunodeciency virus (HIV) 33, 102, 431
human papilloma virus see HPV
human rights 262, 2645, 403
hypnosis 245
IAHPC (International Association of Hospice and
Palliative Care) 265
imagery, guided 245
imatinib 186
immunization see HPV vaccination; vaccines
impact evaluation, cancer-related behaviour 58
Improving Outcomes Guidance Reports 134, 1345,
140, 141, 143
incidence rates 56, 6, 260, 279, 3634; see also
epidemiological data
cancer registration 453
and GDP 347
and outcome evaluation 343, 344
trends 5, 6
and worldwide distribution 34750, 41821, 419,
420, 421
inclusiveness 3824
income, developing countries 421, 422; see also GDP
INCTR (International Network for Cancer Treatment
and Research) 437
indications for treatment 1701, 171, 176, 177; see also
optimal treatment model
individual focus, cancer-related behaviour 45
Indonesia 314
inequality see equity; socio-economic status
infections 101, 122; see also HPV; vaccination
causality, cancer 101, 102
microbial aetiology of cancer 1014
risk factors, modiable 446
information
INDEX
dissemination 8491
online 21314; see also websites
sharing 302
and support 209; see also community support
systems 3427, 343; see also cancer registries
Institute of Complementary Medicine (NICM) 240
integration enhancements 2889, 290
integrative oncology see CAM (complementary and
alternative technology)
International Agency for Research in Cancer 5, 101,
102, 108
International Association of Hospice and Palliative
Care (IAHPC) 265
International Atomic Energy Agency 178, 452
International Cancer Control Congresses 453
International Cancer Information Service Group
(ISISG) 21011
international comparisons see global cancer control
International Network for Cancer Treatment and
Research (INCTR) 437
International Union against Cancer (IUCC) 4513,
452
internet; see also websites
forums 30910
online surveys 309
support for sufferers/families 21314
ISISG (International Cancer Information Service
Group) 21011
investment; see also cost of cancer
cancer research 83, 84, 85
returns 451
Japan 8, 351, 352
Johns wort 246
kidney cancer 17980, 186, 420 , 448
know-do gap 86
Knowledge Networks 404
knowledge to action framework 89, 90
ladders
of engagement 297
three-step analgesic 262, 2645
Lance Armstrong Foundation 298
leadership skills 31213, 451
lead-time bias 3523
legislative measures 2667, 408; see also governing
leukaemia 420
levers of change 3312, 3335
liberty, ethics of cancer control 3945
life-expectancy 40910; see also survival
lifestyle risk factors 346, 34950; see also risk factors
and see specic risk factors by name
liver cancer 17980, 356, 420, 448; see also hepatitis B
virus
living with cancer 3
lung cancer 734
and active prevention 236, 245
behavioural risk factors 403
chemotherapy drugs 186
economic impacts 13
high-risk approach/taylored prevention 37

incidence/mortality rates 132, 356, 420
lymphoma 448
Macmillan Cancer Support 146, 147
macro-economic indicators 346
mammography 65, 66; see also breast cancer
behavioural changes, achieving 49
manipulativebased practices 240, 246; see also CAM
Marie Curie Cancer Care 146, 147
market research 135
mass media, and cancer-related behaviour 47, 57
mass screening see screening/early diagnosis
massage 246
Mayo lung screening trial 68, 73
MBSR (mindfulness-based stress reduction) 245
McGill quality of life questionnaire (MQOL) 2267
measures of progress 451
media, and cancer-related behaviour 47, 57
medication; see also cost of new medicines;
chemotherapy
outcome indicators 346, 446
meditation 245
melanoma see skin cancer
meta-analyses, cancer-related behaviour 44
microbial aetiology of cancer 1014
Millennium Development Goals 420
mind-body medicine 240, 244, 2456. see also CAM
mind, role in cancer 241
mindfulness-based stress reduction (MBSR) 245
MMCRR (motivation, modelling, capacity,
remembering, reinforcement) 44; see also big ve
principles of cancer-related behaviour
mobile phones 49
modelling, behavioural 47, 54, 446
molecular pathways, lung cancer 37
monitoring 451; see also outcome evaluation
morphine 2657, 266, 439
mortality rates 67, 260, 279, 4001; see also
epidemiology; outcome evaluation
and active prevention 23
advances 448
and cancer control 4, 399, 400
childhood cancers 40910
outcome evaluation 343, 344, 355, 3556
and population growth 5, 6
UK 132, 133
US 7
worldwide 341, 363, 417, 418, 419, 420
motivation 446
big ve principles 457
examples 54
mouth cancer see oral cancer
MQOL (McGill quality of life
questionnaire) 2267
music therapy 245
must do actions 1401
463
464
INDEX
National Audit Ofce 137, 144

National Cancer Action Team (NCAT) 139, 144, 145
National Cancer Alliance 135
National Cancer Control Plan (WHO) 65
National Cancer Director 136, 139, 146
National Cancer Equality Initiative 149
National Cancer Institute Cancer Information
Service 213
National Cancer Institute of Canada 323
National Cancer Intelligence
Network 139, 148, 150
National Cancer Research Institute (NCRI) 147
National Cancer Screening Team 139
National Cancer Survivorship Initiative 149
National Cancer Waits Project (NCWP) 144
National Health Service, UK 1312, 452; see also
England and Wales; UK
authors reections 1501
Calman-Hine Report 1334
cancer control programme
development 131, 1489
cancer in the early 1990s 1323, 133
cancer networks 143, 1434
cancer reform strategy 14850
Cancer Services Collaborative 1412
charities, role 1467
funding, training initiatives 142
guidance/standards/peer review 141
national drivers for change 13940
National Health Service, UK 1312
new Labour Government (post 1997) 1356
NHS Cancer Plan 2000 1367
outcome measures 138
outcomes guidance improvements 134, 1345
progress from 2000-2005 1379, 138
radiotherapy, world class provision 1456
research progress 1478
structure/process measures 138
targets/performance management 1401
waiting times, achieving targets 1445, 145
National Institute for Clinical Excellence
(NICE) 199200, 369
National Radiotherapy Advisory Group (NRAG) 145
navigators 249
NCAT (National Cancer Action Team) 139, 144, 145
NCD see non-communicable diseases
NCRI (National Cancer Research Institute) 147
NCWP (National Cancer Waits Project) 144
neck cancer 120, 134
needs; see also community support
cancer survivors 21516
priority setting 3667
those affected by cancer 2056
networking/networks 946, 95, 143, 1434; see also
social network analysis
Knowledge Networks 404
social 311
new Labour Government (post 1997) 1356
new medicines, cost of see cost of new medicines
New Zealand

organizations 330
centralization vs. decentralization of
authority 3256
core services 368
services 3335
organizational structures for cancer control 318,
319, 323
health 331
survival after diagnosis 10
NGOs (non-governmental organizations) 2634, 323
NHS Cancer Plan 2000 1367, 143, 149; see also
National Health Service
NHS Improvement - Cancer 139; see also National
Health Service
NICE (National Institute for Clinical
Excellence) 199200, 369
NICM (Institute of Complementary
Medicine) 240
non-communicable diseases (NCD) 399402, 413
cancer mortality/incidence rates 4001
causation model 402, 4024
circles of inuence 412
ecological view of chronic disease care 411, 412
health improvement systems 4069
health sector responses 40913, 412
inequity transition 404
legislative measures 408
mortality rates, worldwide 399, 400
reforms, WHO 4056
risk factor exposure 405
social inequality model 4034
socio-economic status 404
taxation/scal mechanisms 4089
vulnerability, differential 405
non-governmental organizations
(NGOs) 2634, 323
NRAG (National Radiotherapy Advisory
Group) 145
nurses see health care professionals
nutrition see diet
OAM (Ofce of Alternative Medicine) 243
obesity see weight control
objective capacity for change 479, 545
occupational exposure 34, 446; see also risk
factors and see specic risk factors by name
oesophageal cancer 17980, 420
oestrogen and breast cancer 345, 38
Ofce of Alternative Medicine (OAM) 243
Online boards 214
online surveys 309; see also internet; websites
opioid supply 2657, 266, 439
optimal treatment model 16970, 182
cancer type/tumour stage/treatment
guidelines 178, 181
decision trees 171, 1712, 172, 173
demand modelling/model robustness 172
estimating other end-points 181
INDEX
external beam radiotherapy 176

indications for treatment 1701, 171, 176, 177
model limitations 1767
new treatments 178
optimal re-treatment rates 182
other applications 181
patient choice 177
peer review 175
radiotherapy provision 16970
radiotherapy service planning,
population-based 1778
radiotherapy utilization 170, 172, 173, 174
sensitivity analysis 1745
shortfalls 178, 17980
use on non-Australian populations 181
oral cancer 120
early detection/screening 433
mortality rates, worldwide 356
survival rates, US 448
oral contraceptives 35
organizational model 59
organizational planning 2858, 286, 288, 291, 292
organizational structures for cancer
control 317, 332, 336
action priorities/strategy
implementation 3234
organizations 330
Canadian provinces 3213
centralization vs. decentralization of
authority 3256
critical factors for successful
implementation 332
dedicated versus general approaches 324
governing cancer control reforms 3246
governing models 32631, 327
health care system requirements 318
international comparisons 31819
services 3312, 3335
policy development features 31920
health 331
outcome evaluation 3412, 358, 451; see also global
cancer control; incidence rates; mortality rates;
survival
burden of cancer parameters 810, 3445
cancer information systems/registries 3427, 343
cost of new medicines 197, 1978
distribution, worldwide 34750
future objectives 358
incidence/primary prevention 347, 348
monitoring 451
mortality rates 343, 344, 355, 3556
outcome indicators 3437, 346
performance measures 138, 2835, 285, 286, 294
prevalence rates 356, 3567
survival/cancer care 3504, 351, 352, 354
outcome modication 134, 1345, 27980
ovarian cancer 35, 74, 448
pain control 262, 2647

Palliative Care Australia 269, 270
palliative/supportive care 229, 25960, 262, 270, 411;
see also community support
cancer control integration 2701
denition 261
developing countries 427, 4389
drug availability chain of command 2647
education, health care professionals 2678
implementation 26870
Improving Outcomes Guidance
Reports 134
national laws/regulations 2667
non-governmental organizations 2634
opioid supply 2656, 266
pain control knowledge gap 266
policy shifts/developments 2624
quality of life 22930, 230
role in cancer control 2602
types 2612
Pallium Project 267
pancreatic cancer 17980
Papanicolaou technique (pap screening test) 106,
11617, 350
pastoral care 232
Pathnder Programme 215
pathnders 249
Patient Centred Cancer Services Report 135
patient/s
information 147
optimal treatment model 177
as partners 243
paying for treatment, developing countries 4378;
see also cost
PBMA (programme budgeting and marginal
analysis) 3703, 372, 3745
peer review 141, 175
penile cancer 119
Penny Brohn Cancer Care 243
people-centred care 405
performance targets see targets
personal liberty, ethics of cancer
control 3945
person-years of life lost (PYLL) 12
physical activity 244, 447, 447
and breast cancer 350
colon cancer 36
physical function domain 231
physical well-being domain 2301
planning policy, population-based 2858, 286, 288,
291, 292
PLCO trial 74
policy; see also governing
development features 31920
reforms 406
HPV vaccine 122
research science application 913
shifts 244, 2624
population age, and burden of
cancer 5, 6, 10, 14, 15
population average risk of disease 36
465
466
INDEX
population-based cancer control

systems 281, 283, 294
cancer registries 3427, 343, 357, 428, 453
challenges 27980, 4501
effectiveness/necessity 2914
efciency enhancements 28891, 290, 291
interventions 284
organizational planning 2858, 286, 288, 291, 292
outcome analysis 1978, 197
outcome performance measures 2835, 285, 286,
294
policy/planning 2823
preparedness 288
principles 446
treatment/care/control 280
population-based prevention strategies 2923, 4067
population-based radiotherapy service
planning 1778
population-based survival 350
population growth, and incidence/mortality rates 5, 6
positive reinforcement, behavioural 4951, 56, 446
postcode lotteries 146
postmodernism 242
power, governmental 331; see also governing
practitioners see health care professionals
predictive markers, cost of new medicines 2023
prevalence 78, 343, 3445, 356, 3567; see also
epidemiological data
prevention, active 28, 38, 4067
alcohol 2930
diet 313
environmental/occupational exposure 34
examples 546
future directions 378
health sector 40913, 412
and incidence, worldwide 34750
infections 334
medication 346
physical activity 30
population-based 2923, 4067
public engagement 299, 31213
success/potential 237
sun exposure 33
taylored prevention 367
tobacco 279
weight control 301
Primary Care Trusts 143
primary prevention 34750
priority setting 363, 366, 377
burden/cost of cancer 3634, 365, 366
core services 367, 368
cost-per QALY league tables 370, 371
economic evaluation 36770, 369
economic principles 3645
ethics and economics 3737, 376
historical allocation 366
needs assessment 3667
programme budgeting and marginal
analysis 3703, 372, 3745
privacy 3934
private interests 391
problem-specic conceptual model of cancer-related

behaviour 523, 53
procedural ethics 3828
process evaluation research 58
process of carcinogenesis 279, 280, 281, 283, 291
prognosis, and palliative/supportive care 264
prognostic markers 2023
programme budgeting and marginal analysis
(PBMA) 3703, 372, 3745
Programme Ontario Canada 15861, 159, 162
prostate cancer 5, 723
mortality rates 356, 420
prosthetics, developing countries 438
PSA (prostate) test 356
pseudo-cancers 353
psychological needs/well-being 21516, 231, 243
psychosocial distress 2056, 228; see also community
support
psychosocial model 2423
public consultation see stakeholder dialogues
public engagement in cancer control 2978, 299, 300,
31213, 314
authentic engagement 3001
benets 297
community engagement 314
continuum 300, 301
frameworks 3012
increasing public capacity for cancer
control 299300
information sharing techniques 302
leadership skills 31213
methods 3067
new trends 3078
principles 3056
resources/how-to guides 316
schema 298
strategies 3025
technological applications 30812
PYLL (person-years of life lost) 7, 12
quackery 242
quality adjusted life years (QALYs) 11, 370, 371, 373,
375
Quality End-of-Life Care 263
quality of life (QOL) 4, 221, 2334
advantages of measuring 2235
assessment tools 2258
cancer survivors 229
and cost of cancer care 232, 370, 371
denition/conceptions 2213, 223, 224
initial diagnosis 228
measurement by proxy 2278
palliative care 229
palliative/supportive care impact 22930, 230
physical function domain 231
physical well-being domain 2301
primary treatment 228
psychological well-being domain 231
recurrence 2289
sexuality/intimacy 2323
INDEX
social/family well-being domain 2312

spiritual well-being domain 232
Quality of Life - Cancer Survivors (QOL-CS) 227
quality of life index (QL-index) 225
quantitative/qualitative research
methodology 58
racial factors 8, 10
radiation 34; see also risk factors and see specic risk
factors by name
radiotherapy
decision trees 173
indications 170, 171, 176, 177
optimal treatment model 16970
provision 1456
service planning 1778
shortfalls 178, 17980
utilization, optimal 172, 174
Raloxifene 356
randomized controlled trials 68, 112, 11214, 247;
see also evidence-based approach
rates, cancer 5, 6; see also epidemiology; incidence;
mortality; prevalence; survival
Reach to Recovery 21213
rectal cancer see colorectal cancer
reductionism 242
reforms, World Health Organization 4056
registries, cancer 3427, 343, 357, 428, 453; see also
information systems
rehabilitation 438
reinforcement, behavioural 4951, 56, 446
relaxation 245
religion 232
remembering, behavioural changes 49, 56, 446
renal cancer 17980, 186, 420 , 448
research; see also application of new research; clinical
trials; evidence based approach; science
technology) 248
ethics 4401
investment 83, 84, 85
progress 1478
Resource, cancer knowledge 157
resource allocation tools 158; see also postcode
lotteries
response-shift model 2223
risk factors, modiable 36, 34950, 403; see also big
ve principles; cancer-related behaviour; and see
specic risk factors
exposure 405
health improvement systems 406
river analogy 16, 45
Rotterdam symptom checklist (RSCL) 2256
Roundtable on Cancer 313
sarcoma 134
Saving Lives - our Healthier Nation 136
schedule for the evaluation of individual quality of life
(SEIQoL) 227
Schistosoma haematobium 33, 102
science of cancer control 824; see also application

of new research; clinical trials; evidence based
approach; research
screening/early diagnosis 5, 74
breast screening 6971
and cancer-related behaviour 546
cervical screening 712
colorectal screening 71
denitions 63
detectable pre-clinical phase natural history 68
education, public/health care professionals 64
evidence base 668
lung cancer 734
and mortality rates 70
organization of 689
outcome evaluation worldwide 345, 347, 358
ovarian cancer 74
pap screening test) 106, 11617, 350
prostate cancer 723
rationale for screening 64
resources 656
strategic planning 65
SEAM (support, education, assessment and monitoring
project) 268
SEER (Surveillance, Epidemiology and End Results)
Program 350
SEIQoL (schedule for the evaluation of individual
quality of life) 227
SELECT trial 32
selective oestrogen receptor modulators
(SERMS) 356
selenium supplementation 32
self-advocacy 222, 223
self-efcacy beliefs 48
sensitivity analysis, optimal treatment
model 1745
sensitivity/specicity relationship 68, 70
services, cancer see cancer services; health care systems
Seventh Day Adventist Church 26
sexuality/intimacy 2323
silent cancers 5
skin cancer 5, 333; see also sun exposure
Australia 5, 36
cancer-related behaviour 523, 53
economic impacts 11
modelling, behavioural 47
and motivation 46
survival rates, US 448
smoking see tobacco smoking
social class see socio-economic status
social cognitive theory 47, 48, 4951
social cohesion 297
social indicators 346
467
468
INDEX
social inequality see equity; socio-economic status

social marketing, of cancer-related behaviour 57
social network analysis 1567; see also networking/
networks
social values 386, 3889, 389; see also ethics
social well-being domain 2312
social workers 232
Society for Integrative Oncology 249
socio-economic status
and health 3913
and survival after diagnosis 10, 136
soft drinks 31
SOP (Surgical Oncology Program) 161
SOR (Standards, Options: Recommendations)
programme 1613
sorafenib 186
specicity/sensitivity relationship 68, 70
spiritual well-being 232, 243, 262
Spitzer quality of life uniscale 225
St. Boniface General Hospital 268
St. Christophers Hospice 268
St. Johns wort 246
stage at diagnosis 8
outcome evaluation worldwide 345, 347
TNM system 264
treatment guidelines 178, 181
stage migration phenomenon 352
stakeholder dialogues 303, 304, 383, 451
new trends 3078, 308
standards 141, 313; see also guidelines
Standards, Options: Recommendations (SOR)
programme 1613
stomach cancer
stove programme 34
strategies, cancer control 437, 4513
stress/distress, and cancer diagnosis 2056, 228; see also
community support
subjective capacity for change 479, 55
sugar sweetened beverages 31
sun exposure 447; see also skin cancer
modelling, behavioural 47
and motivation 46
sunitinib 186
support, education, assessment and monitoring project
(SEAM) 268
supportive care 209, 261. see also community support;
palliative/supportive care
Surgical Oncology Program (SOP) 161
Surveillance, Epidemiology and End Results (SEER)
Program 350
and cancer care 3504
cancer site-standardized relative survival 354

needs 21516
needs assessment tools 227
quality of life 229
rates, UK 136
rates, US 448
synergistic effects 246
synoptic reporting 157
systems perspective 155, 1623, 289
TACTIC (Taylored Assistance for
Choosing Tested cancer control tools in
Communities) 90, 96
Tai Chi 246
tailored prevention strategies 367
Tamoxifen 356
targets
cancer control 452
denition 451
English approach to improvements 1401, 1445,
145
taxation/scal mechanisms 4089
teamwork, cancer control 298
technological applications, public engagement in
cancer control 30812
technology reviews 201
Teenage Cancer Trust 147
telephone-based peer support 213
television, and cancer-related behaviour 47, 57
testicular cancer 17980
theory of planned behaviour 48
therapeutic massage 246
thoracic surgery 161
three-step analgesic ladder 262, 2645
thyroid cancer 448
time after diagnosis 357
timeliness/efciency 3867; see also waiting times
TNM system of cancer staging 264
tobacco smoking 447
active prevention 236, 245, 279
behavioural changes, achieving 49, 50
distribution, worldwide 3489
economic reinforcements for quitting 51
English approach to cancer service
improvements 136
in pregnancy 501
and socioeconomic class 140
tongue cancer 120
training initiatives, funding 142
transparency, ethics and cancer control 3856
trastuzumab 186
treatment 318
advances 4489
denition 3, 4
guidelines 178, 181, 2934
INDEX
indications 1701, 171, 176, 177; see also optimal

treatment model
UK (United Kingdom); see also England and Wales;
National Health Service
technology) 249
lung cancer 234
stakeholder dialogues 304
UK Collaborative Trial 74
Undergraduate Medical Information (UME) 249
United States Preventive Services Task Force
(USPSTF) 667; see also US
university-based models of cancer-related
behaviour 59
upstream/downstream factors (river analogy) 16, 45
urological cancers 134, 17980, 448
US (United States)
breast cancer 70
cancer research investment 83, 85
causes of death 7
Center for Disease Control (CDC) 26
complementary and alternative technology (CAM)/
integrative oncology 249
cost-per QALY league tables 371
direct health care costs 9, 1314
gastrointestinal tumours 8
Institute of Medicine 452
lung cancer 246
outcomes 10
population-based survival 350, 351, 352
prevalence 78
Seventh Day Adventist Church 26
US Breast Cancer Detection Demonstrations
Projects 69
uterine cancer 356, 433
vaccines 23, 26; see also HPV vaccination
efcacy, clinical trials 112, 11214
hepatitis B 1014
vaginal/vulval cancers 11819
values, social 386, 3889, 389; see also ethics
Victorian Cooperative Oncology Group 213
vitamin C 246
vitamin D 26, 323
vitamin E 32, 246
volunteer services 215; see also charities

vulnerability, differential 405
waiting times 135, 140; see also timeliness/efciency
achieving targets 1445, 145
Wales see England and Wales; National
Health Service; UK
walking see physical activity
WCRF (World Cancer Research Fund) 349, 452
WDC (World Cancer Declaration) 37, 452
websites 155, 158, 160, 161; see also internet; online
surveys
technology) 244
cancer control strategies 453
internet/online support 21314
Palliative Care Australia 269
quality of life 233
weight control 27, 349, 447
abdominal fatness 349
whole medical systems 240; see also CAM
willingness-to-pay (WTP) 1213, 13
World Bank income statistics, worldwide 421, 422
World Cancer Declaration (WDC) 37, 452
World Cancer Report (2008) 45, 452
World Cancer Research Fund (WCRF) 349, 452
World Health Organization (WHO)
denition of palliative care 262
four pillars of cancer control 452
Global Strategy on Diet, Physical Activity and
Health 407, 408, 452
International Agency for Research in
Cancer 101, 102
know-do gap 86
reforms 4056
strategic planning 65, 4513, 408
tobacco smoking 349
worldwide comparisons see global cancer control;
outcome evaluation
WTP (willingness-to-pay) 1213, 13
years of life lost (YLL) 7, 12; see also disability adjusted
life years; quality adjusted life years
yoga 246
469

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Cancer Control

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MD, DSC, FRCPC, FAFPHM

Vice-President, Family and Community Oncology,

MD, FRCP, FRCPC, FRCR

Board Chair, Canadian Partnership Against Cancer;

Great Clarendon Street, Oxford ox2 6dp

To Candace, Jeremy, and Briana;

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Part 1 The cancer challenge

Mark Elwood, Simon Sutcliffe

Part 2 Prevention and screening

Graham Colditz, Courtney Beers

David Hill, Helen Dixon

Part 3 Applying new knowledge

closing the gap between discovery and delivery 81

the example of HPV vaccination 101

Part 4 Optimizing patient care

towards a systems approach 153

Michael Barton, Geoff Delaney

Susan E. OReilly, Jaya Venkatesh

Shirley Bush, Eduardo Bruera

13 Shifting the paradigm: from complementary and

alternative medicine (CAM) to integrative oncology 239

Genevieve Thompson, Carla Ens, Harvey Chochinov

Part 5 Integrated cancer control

population-based cancer control systems 279

doing something besides worrying 297

Andrea Micheli, Paolo Baili, Roberta Ciampichini, Arduino Verdecchia

Stuart Peacock, Lindsay Hedden, Craig Mitton

Robert Burton, Jerzy Leowski Jr, Maximilian de Courten

Simon Sutcliffe, Mark Elwood

Tara Addis, BSc

Harvey M.Chochinov, MD, PhD, FRSC

Batrice Fervers, MD, PhD

J. Mark Elwood, MD, DSc, FRCPC, FAFPHM

Michael Jefford, MBBS, MPH,

Carla D.L. Ens, MSc, PhD

Helen Dixon, PhD

Jon F. Kerner, PhD

Doreen Oneschuk. MD, CCFP

Lisa Schwartz, PhD

Jaya Venkatesh, MHA, CMA

Dugald Seely, ND, MSc

Arduino Verdecchia, PhD

Simon B. Sutcliffe, MD, FRCP, FRCPC, FRCR

Marja Verhoef, PhD

The cancer challenge

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Cancer control and the burden of cancer

An introduction to cancer control

CANCER CONTROL AND THE BURDEN OF CANCER

Patients with cancer

Public health, health care

Measures of the burden of cancer

MEASURES OF THE BURDEN OF CANCER

Incidence, mortality, and years of life lost

CANCER CONTROL AND THE BURDEN OF CANCER

Cases (in thousands)

Deaths (in thousands)

(1980 cancer rate)

MEASURES OF THE BURDEN OF CANCER