J. Mark Elwood, Simon B. Sutcliffe - Cancer Control PDF
J. Mark Elwood, Simon B. Sutcliffe - Cancer Control PDF
Cancer Control
Edited by
J. Mark Elwood,
Simon B. Sutcliffe,
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
Anthony Miller
Mike Richards
8 Population-based cancer control and the role of guidelines
Michael Jefford
12 Improving quality of life 221
CONTENTS
Lorraine Caron
18 Evaluating the outcomes of cancer control 341
Lisa Schwartz
21 Integrating cancer control with control of other non-communicable diseases 399
Ian Magrath
23 Strengthening the global community for cancer control 445
Contributors
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
Patricia Kelly, MA
Chief Executive Officer,
Campaign to Control Cancer (C2CC),
Toronto, Ontario, Canada (Chapter 16)
CONTRIBUTORS
xiii
xiv
CONTRIBUTORS
Part 1
Chapter 1
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.
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 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
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.
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
90
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
40
35
35
30
25
20
30
Aging population
25
Population growth
20
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
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.
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
1,220,110
552,200
Ratio to incidence
Ratio to incidence
Source
306.8 million
1,479,250
0.45
562,340
[35,36]
0.38
8,450,000
6.9
8,400,000
6.9
11,100,000
7.5
[33,36]
[33]
[36,45]
37.0
30,325
93.2
63,005
[36,45]
11.0
9,016
18.8
12,709
[36,45]
59.0
48,356
116.1
78,486
[36,45]
Overall costs
107.0
87,697
228.1
154,200
960.6
787,306
[33]
232.4
190,475
[35]
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.
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
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
8.45
960.6
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
Total, 2020
Total
Men
Women
8.29
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
28.0
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].
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].
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.
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.
REFERENCES
References
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design, governance, and implementation, monograph. Agence dvaluation des technologies et des modes
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gouv.qc.ca/site/250.1043.0.0.1.0.phtml.
2 World Health Organization, International Agency for Research on Cancer (IARC) (2008). World
Cancer Report 2008. IARC.[cited 2009 July 2];[1524]. Available from: http://www.iarc.fr/en/
publications/pdfs-online/wcr/2008/index.php.
3 Jemal A, Thun MJ, Ries LA, et al (2008). Annual report to the nation on the status of cancer, 19752005,
featuring trends in lung cancer, tobacco use, and tobacco control. J Natl Cancer Inst., 100(23):16721694.
4 Canadian Cancer Societys CCS Steering Committee. Canadian Cancer Statistics 2009.[1124].
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CCS/Canada%20wide/Files%20List/English%20files%20heading/pdf%20not%20in%20publications%
20section/Stats%202009E%20Cdn%20Cancer.ashx.
5 Sarma AV & Schottenfeld D (2002). Prostate cancer incidence, mortality, and survival trends in the
United States: 19812001. Semin Urol Oncol., 20(1):39.
6 Black WC (2000). Overdiagnosis: An underrecognized cause of confusion and harm in cancer
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7 Staples MP, Elwood M, Burton RC, Williams JL, Marks R, & Giles GG (2006). Non-melanoma skin
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8 Jemal A, Ward E, Hao Y, & Thun M (2005). Trends in the leading causes of death in the United States,
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9 Kung HC, Hoyert DL, Xu J, & Murphy SL (2008). Deaths: final data for 2005. Natl Vital Stat Rep.,
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10 Becker R, Silvi J, Ma FD, LHours A, & Laurenti R (2006). A method for deriving leading causes
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11 Capocaccia R & De Angelis R (1997). Estimating the completeness of prevalence based on cancer
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12 Horner MJ, Ries LAG, Krapcho M, et al (2009). Surveillance epidemiology and end results SEER
cancer statistics review, 19752006. National Cancer Institute (NCI). [cited 2009 July 3]. Available
from: http://seer.cancer.gov/csr/1975_2006/index.html.
13 Canadian Cancer Society (CCS) (2008), National Cancer Institute of Canada. Canadian Cancer
Statistics 2008. [cited 2009 July 3];[1108]. Available from: http://www.cancer.ca/canada-wide/
about%20cancer/cancer%20statistics/canadian%20cancer%20statistics.aspx?sc_lang=en.
14 Pollack LA, Greer GE, Rowland JH, et al (2005). Cancer survivorship: a new challenge in
comprehensive cancer control. Cancer Causes Control, 16(Suppl 1):5159.
15 Coleman MP, Quaresma M, Berrino F, et al (2008). Cancer survival in five continents: a worldwide
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16 Berrino F, De Angelis R, Sant M, et al (2007). Survival for eight major cancers and all cancers
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19
Part 2
Chapter 2
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.
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
HR and 95% CI
0.8
0.6
0.4
0.2
0
<5
5 to <10
10 to <15
15 to <20
20
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.
HR and 95% CI
0.8
0.6
0.4
0.2
0
<5
5 to <10
10 to <15
15 to <20
= 20
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,
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.
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
Physical inactivity
Lifestyle
factors1
Sun exposure
2 (ignored by Danaei)
1 (ignored by Danaei)
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
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
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.
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].
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
35
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.
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.
37
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
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
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).
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.
is rewarded for doing it, or suffers for not doing it (positive and negative reinforcement)
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.
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.
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.
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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
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].
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52
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)?
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
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.
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54
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.
Modelling
Provide perceptions
of role models
demonstrating
recommended
behaviours.
Table 3.2 (Continued) 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
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.
55
56
Table 3.2 (Continued) 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
Remembering
Make people aware
or conscious of
the need to act
remind & prompt
them.
Reinforcement
Positively reinforce
(reward) cancerpreventive
behaviour;
negatively
reinforce
cancer-risk
behaviour.
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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58
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
Website
Co-location models
Behavioral Research Center, American Cancer
Society, Atlanta, Georgia, USA
http://www.cancer.org/docroot/RES/RES_9.asp
http://www.cancervic.org.au/about-our-research/
our-research-centres/centre_behavioural_research_cancer
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
http://www.gvo.unimaas.nl/index_uk.htm
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.
59
60
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Chapter 4
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.
Anthony B. Miller, MD, FRCP, Associate Director, Research, Dalla Lana School of Public Health, University
of Toronto, Toronto, Ontario Canada.
64
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?
Consider alternative strategies to reach the same objectives (primary prevention or improved
treatment)
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
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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.
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):
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.
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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
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.
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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].
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,
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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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42 Schrading S & Kuhl CK (2008). Mammographic, US, and MR imaging phenotypes of familial breast
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43 Coldman A, Phillips N, Warren L, & Kan L (2006). Breast cancer mortality after screening
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44 Sarkeala T, Heinavaara S, & Antilla A (2008). Organised mammography screening reduces breast
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Part 3
Chapter 5
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
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.
increased awareness of, more positive attitudes towards, and use of screening services.
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).
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].
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84
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
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.
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
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.
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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.
93
94
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
2A
2C
Construct rationale
2B
Confirm cancer type & population
DH1
Develop & assess feasibility
of intervention goal
Conducting a
needs assessment
4
4B
4A
Consider CG/other intervention approaches that would promote
goal attainment (e.g. client reminders, small media)
5
Make decision about programme/intervention approach
Narrow the options; assess fit of programmes/intervention approaches under review; choose programme/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)
6B
6A
Minimally adapt (replication)
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.
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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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Chapter 6
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.
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
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
Carcinogenic
Carcinogenic
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
Carcinogenic
Probably carcinogenic
2A
Possibly carcinogenic
2B
Carcinogenic
Carcinogenic
HTLV-II
Not classifiable
HIV-2
Possibly carcinogenic
2B
Carcinogenic
Probably carcinogenic
2A
HPVs 16, 18, 31, 33, 35, 39, 45, 51, 52, 56,
58, 59, 66
Carcinogenic
HPVs 6, 11
Possibly carcinogenic
2B
Possibly carcinogenic
2B
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
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.
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
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
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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].
107
108
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].
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.
Cervarix
Gardasil
16, 18 (bivalent)
Dose of L1 protein
20/20 g
20/40/40/20 g
Expression system
Yeast
Adjuvant
AlSO4 (proprietary)
Injection schedule
0, 1, 6 months
(0.5 ml, intramuscular)
0, 2, 6 months
(0.5 ml, intramuscular)
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112
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 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].
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].
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.
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118
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].
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.
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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
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58 Villa LL, Perez G, Kjaer SK, et al (2007). Prophylactic efficacy of a quadrivalent human papillomavirus
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61 Herzog TJ, Huh WK, Downs LS, et al (2008). Initial lessons learned in HPV vaccination. Gynecologic
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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
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65 Garnett GP, Kim JJ, French K, & Goldie SJ (2006). Chapter 21. Modelling the impact of HPV vaccines
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66 Kulasingam S, et al (2007). A cost-effectiveness analysis of adding a human papillomavirus vaccine to
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67 Brisson M, N Van de Velde, P De Wals (2007). The potential cost effectiveness of prophylactic human
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Part 4
Chapter 7
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 improve survival rates through screening, early diagnosis and optimal delivery of treatments
To improve the quality of care, and thereby the quality of life, for those affected by cancer
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:
What strategies have been adopted over the past 15 years and why?
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
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.
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]
100
60
80
60
40
40
20
20
0
0
199193 199496 199799 200002
Colorectal
Northern Europe
Southern 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.
Colorectal cancers
Lung cancers
1998
Gynaecological cancers
1999
2001
Urological cancers
2002
Haematological cancers
2003
2004
2004
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
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.
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 large scale survey of the perceptions of cancer patients regarding their experience of
care [16]
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.
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.
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.
137
138
Screening
Uptake/coverage rates
Numbers and rates of cancers detected
Size/stage of cancers detected
Various quality assurance measures
Waiting times
Multidisciplinary teams
Treatment
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
Survival
Mortality
Patient Experience
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].
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:
139
140
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.
Establishment of a colorectal cancer screening programme if and when pilot studies demonstrated that this was appropriate
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.
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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).
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.
To develop and monitor local plans which are in line with national policy
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)
Commissioning Group
Tumour Groups
E.g. Breast, colorectal,
lung, urological cancer
Cross-cutting Groups
E.g. radiotherapy,
chemotherapy, palliative
care
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144
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.
% 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).
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146
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.
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.
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.
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 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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148
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.
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.
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.
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150
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.
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.
National support for local implementation through the National Cancer Action Team, The
Cancer Screening Programme, NHS Improvement, and the National Cancer Intelligence
Network.
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
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.
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.
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.
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POPULATION-BASED CANCER CONTROL AND THE ROLE OF GUIDELINES TOWARDS A SYSTEMS APPROACH
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
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].
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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POPULATION-BASED CANCER CONTROL AND THE ROLE OF GUIDELINES TOWARDS A SYSTEMS APPROACH
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.
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].
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POPULATION-BASED CANCER CONTROL AND THE ROLE OF GUIDELINES TOWARDS A SYSTEMS APPROACH
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.
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.
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.
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POPULATION-BASED CANCER CONTROL AND THE ROLE OF GUIDELINES TOWARDS A SYSTEMS APPROACH
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.
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.
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.
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POPULATION-BASED CANCER CONTROL AND THE ROLE OF GUIDELINES TOWARDS A SYSTEMS APPROACH
Organization
Belgium
Canada
France
Germany
Hungary
Israel
Ministry of Health
Italy
Lithuania
Netherlands
Spain
United Kingdom
SUMMARY
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.
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167
Chapter 9
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
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].
Description
II
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 type
Expert opinion
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).
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
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
0.68
0.20
No surgery
Oesophagus cancer
0.59
Symptomatic locoregional disease
0.75
TxNxM1
Brain metastases
0.85
0.32
0.10
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
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
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].
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
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)
Oesophagus
179
180
Cancersite
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
6SEER
7NYCRIS
8NSW
9VIC
10SA
Table 9.4 (Continued) Comparison of optimal and actual radiotherapy utilization rates for various geographical regions
a particular cancer), could easily be incorporated into the model provided that the new proportions of a particular attribute are known.
181
182
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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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
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
187
188
MANAGING THE COSTS OF NEW THERAPIES: THE CHALLENGE OF FUNDING NEW DRUGS
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.
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
MANAGING THE COSTS OF NEW THERAPIES: THE CHALLENGE OF FUNDING NEW DRUGS
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.
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
MANAGING THE COSTS OF NEW THERAPIES: THE CHALLENGE OF FUNDING NEW DRUGS
16,000
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.
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
MANAGING THE COSTS OF NEW THERAPIES: THE CHALLENGE OF FUNDING NEW DRUGS
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.
195
196
MANAGING THE COSTS OF NEW THERAPIES: THE CHALLENGE OF FUNDING NEW DRUGS
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.
supported, countries where information systems may be unaffordable can also conduct similar
close management through paper systems.
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.
197
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MANAGING THE COSTS OF NEW THERAPIES: THE CHALLENGE OF FUNDING NEW DRUGS
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.
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 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.
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.
199
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MANAGING THE COSTS OF NEW THERAPIES: THE CHALLENGE OF FUNDING NEW DRUGS
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
201
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MANAGING THE COSTS OF NEW THERAPIES: THE CHALLENGE OF FUNDING NEW DRUGS
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.
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20 Blanke C, Rankin C, Demetri GD, et al (2008). Phase III randomized, intergroup trial assessing imatinib
mesylate at two dose levels in patients with unresectable or metastatic gastrointestinal stromal tumors
expressing the kit receptor tyrosine kinase: S0033. JCO, 26(4):62632.
21 Romond EH, Perez EA, Bryant J, et al (2005). Trastuzumab plus adjuvant chemotherapy for operable
her2-positive breast cancer. N Engl J Med, 353:167384.
22 Joensuu H, Kellokumpu-Lehtinen PL, Bono P, et al (2006). Adjuvant docetaxel or vinorelbine with or
without trastuzumab for breast cancer. N Engl J Med, 354:80920.
23 Smith I, Procter M, Gelber RD, et al (2007). 2-year follow-up of trastuzumab after adjuvant chemotherapy in her2-positive breast cancer: a randomized controlled trial. Lancet, 369:2936.
24 Viani GA, Afonso SL, Stefano EJ, et al (2007). Adjuvant trastuzumab in the treatment of her-2 positive
early breast cancer: a meta-analysis of published randomized trials. BMC Cancer, 7(153):111.
25 Piccart-Gebhart MJ, Procter M, Leyland-Jones B, et al (2005). Trastuzumab after adjuvant chemotherapy in her2-positive breast cancer. N Engl J Med, 353:165972.
26 Motzer RJ, Hutson TE, Tomczak P, et al (2007). Sunitinib versus interferon alfa in metastatic renal-cell
carcinoma. N Engl J Med, 356(2):11524.
27 Escudier B, Eisen T, Stadler WM, et al (2007). Sorafenib in advanced clear-cell renal-cell carcinoma.
N Engl J Med, 356(2):12534.
28 Bach PB (2009). Limits on Medicares ability to control rising spending on cancer drugs. N Engl J Med,
360:626633.
29 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. JCO,
23(22):17.
Chapter 11
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.
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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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.
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].
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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.
General
Specific
Completely passive
booklets, Internet
General public
volunteers
Peer support
volunteers
Information
specialists; clinical
staff
Highly specialized
professionals
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
Many
More specific /
complex needs
Some
Specific suggestions
Counselling
Few
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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].
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]).
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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.
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].
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.
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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.
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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
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.
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.
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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,
Physical
QO
Psychological/
Emotional
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.
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Expectations
gap
QOL
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.
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.
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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).
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].
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].
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].
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.
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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.
Cancer treatment
Supportive and
palliative care
Bereavement
Diagnosis
Death
Cancer treatment
(curative and palliative)
Diagnosis
Bereavement
Death
Fig. 12.3 Role of cancer treatment and supportive and palliative care in improving quality of life
(QOL) in cancer patients.
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].
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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].
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
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.
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
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.
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 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].
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].
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.
243
244
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
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)
245
246
Table 13.1 (Continued) Evidence-based benefits of complementary and alternative medicine (CAM)
interventions
CAM intervention
Yoga
Evidence
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]
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
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.
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]
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].
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emphasizes a whole person and lifestyle approach to cancer care, evaluating complex systems, and
collaborative pathways of care, in contrast to single interventions alone.
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].
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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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127 Cohen L, Cohen MH, Kirkwood C, & Russell NC (2007). Discussing complementary therapies in
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129 Verhoef MJ & Sutherland LR (1995). Alternative medicine and general practitioners. Opinions and
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130 Baugniet J, Boon H, & Ostbye T (2000). Complementary/alternative medicine: comparing the view
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131 Verhoef M, Best A, & Boon H (2002). Role of complementary medicine in medical education:
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132 Grollman AP (2001). Alternative medicine: the importance of evidence in medicine and in medical
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133 Duggan K, Verhoef MJ, & Hilsden RJ (1999). First-year medical students and complementary
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134 Verhoef M, Brundin-Mather R, Jones A, Boon H, & Epstein M (2004). Complementary and
alternative medicine in undergraduate medical education. Associate deans perspectives. Can Fam
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137 Wetzel MS, Kaptchuk TJ, Haramati A, & Eisenberg DM (2003). Complementary and alternative
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139 Sierpina VS, Kreitzer MJ, Burke A, Verhoef M, & Brundin-Mather R (2007). Innovations in
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140 Owen DK, Lewith G, & Stephens CR (2001). Can doctors respond to patients increasing interest in
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142 Verhoef M, Epstein M, & Brundin-Mather R (2004). Developing a national vision for complementary
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Chapter 14
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.
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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.
Primary prevention
Early detection
Palliative care
Fig. 14.1 The four integrated components of a comprehensive cancer control strategy
Source: From Stjernsward et al. (2007) [6].
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.
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
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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].
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.
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].
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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Patient Requirements
Health care providers
Hospitals, pharmacies, palliative care
Available Narcotics
Importers, manufacturers, distributers
National Competent authority
International Narcotics Control Board
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.
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.
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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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Consultation /
Liason (B)
Patient Needs
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].
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
Chapter 15
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
Cancer outcomes can be favourably influenced through therapeutic interventions, most successfully when applied earlier in the trajectory of the process.
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].
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).
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
cytology
radiology
pathology
surgery; RT; systemic therapies
supportive
palliative
end-of-life
pre-clinical
diagnosis
prognosis
therapeutic
100
Probability
of survival
(%)
0
Time
Diagnosis of
invasive
cancer
281
282
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).
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.
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.
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
A programme organized to be
comprehensive to the spectrum of
cancer control and the interventions
necessary to address improving
outcomes
Evidence-based standards of
effectiveness, quality, and safety
built into interventional
programme structure
Integration of interventions
across institutions, health
settings (community;
tertiary, etc.) and socioeconomic circumstances
Focused on continuously
enhancing cancer control
outcomes
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.
283
284
DIABETES
CANCER
HEART DISEASE
PREVENTION
Health & Well-Being
strategies
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
Outcome measure
Treatment outcome
Patient (person)-specific
outcome measures (individual)
Measures aggregated at
population level
Socio-economic outcomes
Socio-political outcomes
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.
285
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)
Organizational
Implementation and
service delivery
Financial and
operational
management
Stakeholder
engagement
Oversight
Multiple levels
- designated providers/Boards
- NGOs; foundations
- patients and survivors
- public
Accountability
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
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.
287
288
Surveys
Prevention
Palliation
End-of-life care
Population Outcomes
Incidence; mortality;
Quality of life
MOLECULAR
ACCESS
Early detection
Treatment
Comprehensive
Cancer Control
Care
Support/palliation
Intensity
of
intervention
Interventions
(low tech)
Surgery
Radiation
Chemotherapy
Interventions
(high tech)
Disease Outcomes
Survival; cure; quality
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.
(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
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
IM/IT
EHR
Multidisciplinary teams
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
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
Regional
National
Institution
(sub-national)
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292
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?
Industry
investors
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
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
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].
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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Chapter 16
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:
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
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.
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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GETTING THE PUBLIC INVOLVED IN CANCER CONTROL DOING SOMETHING BESIDES WORRYING
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.
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.
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 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
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.
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GETTING THE PUBLIC INVOLVED IN CANCER CONTROL DOING SOMETHING BESIDES WORRYING
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
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.
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:
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 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
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GETTING THE PUBLIC INVOLVED IN CANCER CONTROL DOING SOMETHING BESIDES WORRYING
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 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.
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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.
Collaborative
Inspired by values
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Stakeholder management
Unilateral or bilateral
Multilateral or system-wide
Organization-centric
Solution-centric
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:
Act together.
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 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 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:
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 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:
Those who write and respond represent a small portion of the public.
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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.
Because the tools are internet based, there will be limitations on the number of people who can
participate.
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).
Five 55-minute workshops per year about healthy living knowledge, attitudes, and skills
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:
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.
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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.
REFERENCES
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4 National Cancer Leadership Forum (2006). NCLF Theory of Relationships. Available from: http://www.
controlcancer.ca/en/news/nclf-events.
5 International Association for Public Participation (2007). IAP2 Spectrum of public engagement. Available
from: http://www.iap2.org/associations/4748/files/spectrum.pdf.
6 Public Agenda Engagement Resource Center (2008). Public Engagement: A Primer from Public Agenda.
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7 Public Agenda Engagement Resource Center (2008). Choicework. Available from: http://www.
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8 Britain Against Cancer (2007). Updating the national strategy for cancer. Available from: http://www.
macmillan.org.uk/Get_Involved/Campaigns/APPG/cancer_news_in_parliament.aspx. Also cited on
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9 Canadian Strategy for Cancer Control (2008). A successful nationwide advocacy campaign to control
cancer. Available from: http://www.controlcancer.ca.
10 Yankelovich D (1991). Coming to public judgement: Making democracy work in a complex world.
Syracuse University Press, Syracuse, New York.
11 Baranowski T, Davis M, Resnicow K, et al (2000). Gimme 5 fruit, juice, and vegetables for fun and
health: outcome evaluation. Health Educ Behav, 27(1):96111.
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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Chapter 17
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.
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Table 17.1 From cancer treatment to cancer control: requirements for health care systems
Approach
Cancer treatment
Cancer care
Cancer control
Structural features
related to service
delivery
Multidisciplinary teams
Patient navigators
Networks of providers within
and across regions
Integrated care programmes
at local, regional, national
levels
Facilities: centres
and hospitals
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.
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
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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.
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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.
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326
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.
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.
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.
Model 2
Model 3
Alberta
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
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
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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
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.
329
330
ACB
(Alberta)
BCCA
(British Columbia)
CCO
(Ontario)
DoH cancer
taskforce and
NCAT (England)
INCA (France)
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
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.
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
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/
http://www.
cancerboard.
ab.ca/
http://www.
albertahealthservices.ca/
http://www.
http://www.
phsa.ca/
cancercare.
http://www.
on.ca/
bccancer.bc.ca
Dedicated or
relevant
legislations
and
regulations
Society Act
(created BCCA
in 1974)
Tobacco
control
Act (2006,
amended
2007)
England
France
New Zealand
Cancer Act
(1990)
Smoke-free
Ontario Act
(2006)
MoH.
Cancer plan
(20032007)
[21]
Nova Scotia
Qubec
DLCC.
Orientations
prioritaires
20072012
du PQLC
[45]
http://www.dh.gov.uk/en/ http://www.
Healthcare/
e-cancer.fr/
NationalServiceFrameworks/
Cancer/
http://www.
moh.govt.nz/
cancercontrol
http://www.
cancercontrolcouncil.govt.nz/
http://www.
gov.ns.ca/
health/
http://www.
cancercare.
ns.ca/
http://www.
msss.gouv.
qc.ca/sujets/
prob_sante/
cancer/
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
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
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
INCa, and
ARH(s) are
under administrative supervision (soustutelle) by
the MoH
INCa produces
progress reports
Nova Scotia
Qubec
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
Not found
Not found
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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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
Chapter 18
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
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.
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
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.
Table 18.1 Percentage of population covered by cancer registries by geographical region [8]
Percentage of coverage
Africa
Asia
Europe
33
Oceania
73
North America
80
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
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344
Number of new cases diagnosed in a time interval/Person years at risk in the interval
Rationale
Utility
Caveat
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
Number of cancer deaths in a period / Person-years at risk during the same period
Rationale
Utility
Caveat
Main source of
information
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.
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
Caveat
Main source of
information
International
projects
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
Caveat
Main source of
information
international
projects
Rationale
Utility
Caveat
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
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
Caveat
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
Rationale
Utility
Caveat
Main source of
information
346
Medicaments
1.11. Prevalence of use of
hormone replacement
therapy drugs
Screening
Screening examinations
Social indicators
5.1.
5.2.
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
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.
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.
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].
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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
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.
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
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
USA
Relative survival
80%
Canada
Japan
60%
Australia
Europe North
40%
Europe South-West
Europe UK+Ireland
20%
Europe East
0%
2
3
4
Years after diagnosis
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
Years after diagnosis
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].
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].
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354
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
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.
Source: GLOBOCAN [13].
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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
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.
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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Chapter 19
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.
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
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].
Table 19.1 Direct costs for cancer care in selected countries in 2004
Direct costs
for cancer
( million)
Cancer costs
as % of total
health care costs
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
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)
10%
France (1998)
83%
7% + 6% transport costs
4%
Netherlands (1994)
18%
11%
Canada (1998)
75%
9%
65%
31%
4%
Australia (1993/1994)
71% (including
nursinghomes)
26%
3%
77%
7%
16%
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].
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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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
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.
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.
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.
371
372
373
374
Gross costs of
Net cost after
DALYs
new programme health cost savings recovered
$AU millions
$AUmillions
Savings of 39.1
10,559
Dominant
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
Not assessed
5,186
935
Not assessed
4,849
5,300
Introduce a national
53.30
colorectal screening program
at ages 5569
38.1
3,187
16,724
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
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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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Chapter 20
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.
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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.
Inclusiveness
Stability
Review mechanisms
Right of appeal
Transparency
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
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].
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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.
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.
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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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.
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.
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392
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?
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394
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.
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
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.
400
Communicable diseases,
maternal and perinatal
conditions, and nutritional
deficiencies
30%
Cardiovascular
diseases
30%
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.
UNDERLYING
SOCIOECONOMIC,
CULTURAL, POLITICAL,
AND ENVIRONMENTAL
DETERMINANTS
Globalization
Urbanization
Population ageing
COMMON MODIFIABLE
RISK FACTORS
INTERMEDIATE RISK
FACTORS
MAIN CHRONIC
DISEASES
Unhealthy diet
Heart disease
Physical inactivity
Stroke
Tobacco use
Cancer
NON-MODIFIABLE
RISK FACTORS
Overweight/obesity
Chronic respiratory
diseases
Age
Heredity
Diabetes
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.
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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404
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 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 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 health sector-orientation to a broader involvement and advocacy for wider social change
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.
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.
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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
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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Family (extended)
Community
health care
services
and
resources
Patient
or
person with
NCD risk
Non-health
care
community
resources
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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31 Glasgow RE, Orleans CT, & Wagner EH (2001). Does the chronic care model serve also as a template
for improving prevention? Milbank Q, 79(4):579612.
32 Declaration of Alma-Ata (1979). Lancet, 1(8109):21718.
33 Starfield B, Shi L, & Macinko J (2005). Contribution of primary care to health systems and health.
Milbank Q, 83(3):457502.
34 Abegunde DO, Shengelia B, Luyten A, et al (2007). Can non-physician health-care workers assess
and manage cardiovascular risk in primary care? Bull World Health Organ, 85(6):43240.
35 Fiscella K & Epstein RM (2008). So much to do, so little time: care for the socially disadvantaged and
the 15-minute visit. Arch Intern Med, 168(17):184352.
36 Hall JJ & Taylor R (2003). Health for all beyond 2000: the demise of the Alma-Ata Declaration and
primary health care in developing countries. Med J Aust, 178(1):1720.
37 Joshi R, Jan S, Wu Y, & MacMahon S (2008). Global inequalities in access to cardiovascular health
care: our greatest challenge. J Am Coll Cardiol, 52(23):181725.
38 Bodenheimer T, Lorig K, Holman H, & Grumbach K (2002). Patient self-management of chronic
disease in primary care. JAMA, 288(19):246975.
39 Glasgow RE, Funnell MM, Bonomi AE, Davis C, Beckham V, & Wagner EH (2002). Self-management
aspects of the improving chronic illness care breakthrough series: implementation with diabetes and
heart failure teams. Ann Behav Med, 24(2):8087.
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416
40 Clark NM & Gong M (2000). Management of chronic disease by practitioners and patients: are we
teaching the wrong things? BMJ, 320(7234):57275.
41 Clark NM (2003). Management of chronic disease by patients. Annu Rev Public Health, 24:289313.
42 Norris SL, Engelgau MM, & Narayan KM (2001). Effectiveness of self-management training in
type 2 diabetes: a systematic review of randomized controlled trials. Diabetes Care, 24(3):56187.
43 Beaglehole R (2005). Global partnerships for health. Eur J Public Health, 15(2):11314.
44 Yach D, Hawkes C, Gould CL, & Hofman KJ (2004). The global burden of chronic diseases: overcoming
impediments to prevention and control. JAMA, 291(21):261622.
45 International Atomic Energy Authority (IAEA) (2008). Building partnerships to fight the cancer
epidemic: Programme of Action for Cancer Therapy (PACT). IAEA (cited 2009 Mar. 20);(124)
Available from: http://www.iaea.org/Publications/Booklets/TreatingCancer/pact0808.pdf.
Chapter 22
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.
12
Cancers
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.
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
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
Males
Less developed
Females
More developed
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.
Source: Data from Globocan 2002 [1].
Breast: Incidence
500.0
400.0
300.0
GLOBOCAN 2002
0.0
25
35
45
55
65
Age
Fig. 22.4 Age-specific incidence rates for breast cancer in selected countries.
Source: Data from Globocan 2002 [1].
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.
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
Population size
Least developed
800 million
Low income
1.3 billion
$936$3,705
3.4 billion
$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.
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.
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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].
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.
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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.
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.
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
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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430
Hungary
Spain
USA*
UK*
S.Africa
Thailand
Morocco
Mexico
Sierra Leone
Bolivia
Bangladesh
India
Burundi
0
1000
2000
3000
4000
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
CHALLENGES FACED BY DEVELOPING COUNTRIES IN IMPROVING AND IMPLEMENTING CANCER CONTROL STRATEGIES
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.
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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.
CHALLENGES FACED BY DEVELOPING COUNTRIES IN IMPROVING AND IMPLEMENTING CANCER CONTROL STRATEGIES
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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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).
CAPACITY BUILDING
Training
Care
Research
Early Detection
Community
Treatment
Cancer Unit/Center
Palliative Care
Community
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.
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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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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.
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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
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
DO WE KNOW ENOUGH ABOUT CANCER TO ENHANCE OUTCOMES ACROSS DIFFERENT RESOURCE SETTINGS?
bOriginal
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.
447
448
All Sites
Thyroid
Hodgkin lymphoma
1999-2005
Urinary bladder
1950-54
Non-Hodgkin lymphoma
Colon
Ovary
Esophagus
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.
100
1990s
1980s
1970s
Survival (%)
75
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Fig. 23.2 Improvements in survival for children with cancer from the 1970s to 1990s in Europe.
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.
449
450
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.
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.
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.
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.
451
452
Table 23.3 The World Health Organizations four pillars of cancer control
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.
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
453
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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26 World Health Organization (WHO), Commission on Social Determinants of Health. Closing the gap
in a generation: health equity through action on the social determinants of health (2008). Final Report
of the Commission on Social Determinants of Health. WHO (cited 2009 Apr. 2);1247. Available from:
http://whqlibdoc.who.int/publications/2008/9789241563703_eng.pdf
27 World Health Organization (WHO) (2009). WHO Framework Convention on Tobacco Control
(FCTC). WHO FCTC (cited 2009 June 8). Available from: http://www.who.int/fctc/en/.
28 World Health Organization (WHO) (2008). The world health report 2008: primary health care now
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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
458
INDEX
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
459
460
INDEX
INDEX
461
462
INDEX
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
distribution, worldwide 348, 3489
economic impacts 13
high-risk approach/taylored prevention 37
463
464
INDEX
INDEX
465
466
INDEX
INDEX
467
468
INDEX
INDEX
469