EQ-5D-5L User Guide
EQ-5D-5L User Guide
Version 2.0
October 2013
Prepared by
Mandy Oemar / Bas Janssen
Table of contents
1. INTRODUCTION..................................................................................................................... 4
1.1. THE EUROQOL GROUP ..................................................................................................... 4
1.2. EQ-5D............................................................................................................................. 4
1.2.1. EQ-5D-3L ....................................................................................................................4
1.2.2. EQ-5D-5L ....................................................................................................................5
1.3. W HAT IS A HEALTH STATE?................................................................................................ 9
8. FAQS .................................................................................................................................... 21
8.1. GENERAL ....................................................................................................................... 21
8.2. REGISTRATION...................................................................................................................... 23
8.3. COPYRIGHT .......................................................................................................................... 23
1.2. EQ-5D
EQ-5D is a standardised measure of health status developed by the EuroQol Group in order to
1
provide a simple, generic measure of health for clinical and economic appraisal .
Applicable to a wide range of health conditions and treatments, it provides a simple descriptive profile and a
single index value for health status that can be used in the clinical and economic evaluation of health care as
well as in population health surveys. EQ-5D is designed for self-completion by respondents and is ideally
suited for use in postal surveys, in clinics, and in face-to-face interviews. It is cognitively undemanding,
taking only a few minutes to complete. Instructions to respondents are included in the questionnaire.
1.2.1. EQ-5D-3L
The EQ-5D 3 level version (EQ-5D-3L) was introduced in 1990. The EQ-5D-3L essentially consists of 2
pages - the EQ-5D descriptive system (page 2) and the EQ visual analogue scale (EQ VAS) (page 3). The
EQ-5D-3L descriptive system comprises the following 5 dimensions: mobility, self-care, usual activities,
1
EuroQol Group. EuroQol-a new facility for the measurement of health-related quality of life. Health Policy 1990;16:199-208
Page | 4
pain/discomfort and anxiety/depression. Each dimension has 3 levels: no problems, some problems, extreme
problems. The respondent is asked to indicate his/her health state by ticking (or placing a cross) in the box
against the most appropriate statement in each of the 5 dimensions. The EQ VAS records the respondent’s
self-rated health on a vertical, visual analogue scale where the endpoints are labelled ‘Best imaginable
health state’ and ‘Worst imaginable health state’. This information can be used as a quantitative measure of
health outcome as judged by the individual respondents.
The EQ-5D-3L has now been translated into more than 170 languages and is used worldwide. However
ceiling effects have been reported, particularly when used in general population surveys but also in some
patient population settings. In order to address these criticisms, and encouraged by demand from clinicians
and other users, the EuroQol Group decided to explore ways of improving the EQ-5D’s measurement
properties.
1.2.2. EQ-5D-5L
In 2005, a Task Force was established within the EuroQol Group to investigate methods to improve the
instrument’s sensitivity and to reduce ceiling effects. After much discussion, the Task Force decided that
there should be no change in the number of dimensions for a new version of EQ-5D. However, previously
published studies by EuroQol Group members showed that experimental 5-level versions of EQ-5D could
significantly increase reliability and sensitivity (discriminatory power) while maintaining feasibility and
potentially reducing ceiling effects. The Group therefore decided that the new version of the EQ-5D should
include five levels of severity in each of the existing five EQ-5D dimensions and that it would be called the
2
EQ-5D-5L (Figure 1) . The existing EQ-5D was renamed the EQ-5D-3L.
The EQ-5D-5L still consists of 2 pages – the EQ-5D-5L descriptive system (page 2) and the EQ Visual
Analogue scale (EQ VAS) (page 3). The descriptive system comprises the same 5 dimensions as the EQ-
5D-3L (mobility, self care, usual activities, pain/discomfort, anxiety/depression). However, each dimension
now has 5 levels: no problems, slight problems, moderate problems, severe problems, and extreme
problems. The respondent is asked to indicate his/her health state by ticking (or placing a cross) in the box
against the most appropriate statement in each of the 5 dimensions. This decision results in a 1-digit number
expressing the level selected for that dimension. The digits for 5 dimensions can be combined in a 5-digit
number describing the respondent’s health state. It should be noted that the numerals 1-5 have no
arithmetic properties and should not be used as a cardinal score. During the development of the EQ-
5D-5L, the opportunity was also taken to improve some of the wording in the dimensions to enhance
consistency and facilitate understanding. For example, the old wording of ‘confined to bed’ to indicate the
upper extreme in the EQ-5D-3L has been replaced with ‘I am unable to walk about’ which is more consistent
with the wording within the Mobility dimension and with the extreme levels on other dimensions.
The EQ VAS records the respondent’s self-rated health on a 20 cm vertical, visual analogue scale with
endpoints labelled ‘the best health you can imagine’ and ‘the worst health you can imagine’. This information
can be used as a quantitative measure of health as judged by the individual respondents. The instructions
2
Herdman M, Gudex C, Lloyd A, Janssen MF, Kind P, Parkin D, Bonsel G, Badia X. Development and preliminary testing of the new
five-level version of EQ-5D (EQ-5D-5L). Quality of Life Research.
Page | 5
for the EQ VAS task have been changed and simplified in the EQ-5D-5L. The EuroQol Group had received
feedback over the years that respondents sometimes found it difficult to draw a line from the box to the scale.
It was also cumbersome for administrators to record their scores. The EQ-5D-5L now asks respondents to
simply ‘mark an X on the scale to indicate how your health is TODAY’ and then to ‘write the number you
marked on the scale in the box below’. This should make the task easier for both respondents and users.
Page | 6
Figure 1: EQ-5D-5L (UK English sample version)
Under each heading, please tick the ONE box that best describes your health TODAY
MOBILITY
I have no problems in walking about
I have slight problems in walking about
I have moderate problems in walking about
I have severe problems in walking about
I am unable to walk about
SELF-CARE
I have no problems washing or dressing myself
I have slight problems washing or dressing myself
I have moderate problems washing or dressing myself
I have severe problems washing or dressing myself
I am unable to wash or dress myself
PAIN / DISCOMFORT
I have no pain or discomfort
I have slight pain or discomfort
I have moderate pain or discomfort
I have severe pain or discomfort
I have extreme pain or discomfort
ANXIETY / DEPRESSION
I am not anxious or depressed
I am slightly anxious or depressed
I am moderately anxious or depressed
I am severely anxious or depressed
I am extremely anxious or depressed
Page | 7
• We would like to know how good or bad your health is TODAY.
• Now, please write the number you marked on the scale in the box below.
Page | 8
Page | 8
1.3. What is a health state?
Each of the 5 dimensions comprising the EQ-5D descriptive system is divided into 5 levels of perceived
problems:
A unique health state is defined by combining 1 level from each of the 5 dimensions.
A total of 3125 possible health states is defined in this way. Each state is referred to in terms of a 5 digit
code. For example, state 11111 indicates no problems on any of the 5 dimensions, while state 12345
indicates no problems with mobility, slight problems with washing or dressing, moderate problems with doing
usual activities, severe pain or discomfort and extreme anxiety or depression.
Page | 9
2. Scoring the EQ-5D-5L descriptive system
Levels of perceived
problems are coded as
Under
By each heading,
placing a tick please
in one tick
box the ONEgroup,
in each box that bestindicate
please describes your h
whic
statements
health TODAYbest describe your health today. follows:
Mobility
MOBILITY
I have no problems in walking about
I have slight problems in walking about
Self-
I have moderate problems in walking about
- about
I have severe problems in walking Level 1 is
I am unable to walk about coded as
a ‘1’
SELF-CARE
Usual Activities
I have no problems
I have washing
some problems or performing
with dressing myself
my usual activities
I have slight problems washing or dressing myself Level 2 is
(e.g.moderate
I have work, study, housework,
problems washingfamily or leisure
or dressing activities)
myself
coded as
I have severe problems washing or dressing myself
a ‘2’
I amPain/Discomfort
unable to wash or dress myself
USUAL ACTIVITIES (e.g. work, study, housework,
family or leisure activities)
I have no problems doing my usual activities Level 3 is
I have slight problems doing my usual activities
coded as
I have moderate problems doing my usual activities a ‘3’
I have severe problems doing my usual activities
I am unable to do my usual activities
PAIN / DISCOMFORT
I have no pain or discomfort
I have slight pain or discomfort Level 4 is
I have moderate pain or discomfort coded as
I have severe pain or discomfort a ‘4’
I have extreme pain or discomfort
ANXIETY / DEPRESSION
I am not anxious or depressed
I am slightly anxious or depressed
I am moderately anxious or depressed
I am severely anxious or depressed Level 5 is
I am extremely anxious or depressed coded as
a ‘5’
.
Page | 10
3. Scoring the EQ VAS
The EQ VAS should be scored, for example, as follows:
Page | 11
4. Converting EQ-5D-5L states to an index value
EQ-5D-5L health states, defined by the EQ-5D-5L descriptive system, may be converted into a single
3
index value . The index values, presented in country specific value sets, are a major feature of the
EQ-5D instrument, facilitating the calculation of quality-adjusted life years (QALYs) that are used to
inform economic evaluations of health care interventions. Studies that directly elicit preferences from
general population samples to derive value sets for the EQ-5D-5L are under development in a
number of countries; however, these studies will take time to complete and for results to be
disseminated.
Several methods were consequently tested to optimize the link function between the two descriptive
systems. The crosswalk link function resulting from this exercise can be used to calculate index
values for EQ-5D-5L, based on the existing value sets for the EQ-5D-3L. Value sets have been
derived for EQ-5D-3L in several countries using visual analogue scale (VAS) technique or time trade-
off (TTO) valuation techniques. The list of currently available value sets with the number of
respondents and valuation technique applied is presented in table 1. Most of the EQ-5D-3L value
sets have been obtained using a representative sample of the general population, thereby ensuring
that they represent the societal perspective. For anyone working with EQ-5D-3L data, an essential
guide to the Group’s available value sets can be found in: EuroQol Group Monograph series: Volume
2: EQ-5D value sets: inventory, comparative review and user guide, published by Springer (see
section 8 for more information).
3
Many different terms are in use for these index values, such as preference weights, preference-based values, utilities, QALY
weights, etc. Here, we use the term 'index value'.
4
Van Hout B, Janssen MF, Feng YS, Kohlmann T, Busschbach J, Golicki D, Lloyd A, Scalone L, Kind P, Pickard AS. Interim
scoring for the EQ-5D-5L: mapping the EQ-5D-5L to EQ-5D-3L value sets. Value in Health.
Page | 12
Table 1: List of available value sets for the EQ-5D-3L (references available on the website)
Page | 13
5. Organising EQ-5D-5L data
Data collected using EQ-5D-5L can be entered in a database according to the following schema:
Variable
name ID SEX AGE EDU COUNTRY YEAR MOBILITY
Variable patient 1=Male 999=Missing 1=Low Country Year in 1=No problems,
description ID 2=Female value 2=Medium where data which data 2=Slight problems
number 9=Missing 3=High was was 3=Moderate
value 9=Missing collected collected problems
value 4=Severe problems
5=Unable to
9=Missing value
Variable
name SELFCARE ACTIVITY PAIN ANXIETY STATE EQ_VAS
Variable 1=No problems 1=No problems 1=No pain 1=Not anxious 5 digit code 999=Missing
description 2=Slight 2=Slight 2=Slight pain 2=Slightly anxious for EQ-5D-5L value
problems problems 3=Moderate 3=Moderately
3=Moderate 3=Moderate pain anxious
problems problems 4=Severe pain 4=Severely
4=Severe 4=Severe 5=Extreme pain anxious
problems problems 9=Missing 5=Extremely
5=Unable to 5=Unable to value anxious 9=Missing
9=Missing value 9=Missing value value
Data row 1 1 3 2 5 41325 60
Data row 2 1 1 1 1 21111 90
Page | 14
6. Presenting EQ-5D-5L results
Data collected using EQ-5D-5L can be presented in various ways. A basic subdivision can be made
according to the structure of the EQ-5D-5L:
The way results can be presented is determined both by the data and by what message you, as a
researcher, wish to convey to your audience.
Sometimes it is more convenient to dichotomise the EQ-5D-5L levels into 'no problems' (i.e. level 1)
and 'problems' (i.e. levels 2 to 5), therefore changing the profile into frequencies of reported
problems. This can be the case, for example, in a general population survey where the numbers of
reported problems are low. Tables 2 and 3 are examples of how to present EQ-5D-5L data in
tabulated form.
Table 2: Percentage of a general population sample reporting levels 1 to 5 by dimension and by age group
AGE GROUPS
Page | 15
AGE GROUPS
Table 3: Frequency of reported problems for a general population sample by dimension and age group
AGE GROUPS
EQ-5D DIMENSION 18-29 30-39 40-49 50-59 60-69 70-79 TOTAL
In addition to presenting the results in tabulated form, you can also use graphical presentations. Two
(or three) dimensional bar charts can be used to summarise the results in a single graph (see Figure
2). Figure 2 shows the sum of the proportion of reported levels 2 to 5 for each of the 5 EQ-5D-5L
dimensions for 3 different age groups. Older people reported more problems on all dimensions but
the effect of age was strongest for mobility and weakest for anxiety/depression.
Page | 16
6.2. EQ VAS
In order to present all aspects of the EQ VAS data, you should present both a measure of the central
tendency and a measure of dispersion. This could be the mean values and the standard deviations
or, if the data are skewed, the median values and the 25th and 75th percentiles. An example is
presented in table 4.
Table 4: EQ VAS values by age – mean + standard deviation and median + percentiles
AGE GROUPS
EQ VAS 18-29 30-39 40-49 50-59 60-69 70+ TOTAL
Mean 85,7 84,3 83,7 79,7 86,1 79,0 84,0
- Std Dev 10,1 12,6 13,3 14,0 11,1 22,6 12,6
Median 88,0 89,0 88,0 80,5 90,0 80,0 86,0
- 25th 80,0 80,0 75,0 73,3 79,0 73,5 80,0
- 75th 93,0 91,0 93,8 90,0 95,0 92,0 92,0
You can present a graphical representation of the data by using bar charts, line charts, or both (see
figure 3). Figure 3 shows the mean EQ VAS scores reported by men, women and both for 7 different
age groups. Mean EQ VAS scores are seen to decrease with increasing age. Also, men in all age
groups reported higher EQ VAS scores than women.
Page | 17
Table 5: EQ-5D-5L index values before and after treatment
N 120 110
Table 6: EQ-5D-5L index values for the total patient population and the 3 subgroups
Figure 4: EQ-5D-5L index values before and after treatment: mean values and 95% confidence intervals
Figure 5: Mean EQ-5D-5L index values and 95% confidence intervals for the total patient population and 3
subgroups.
Page | 18
7. EQ-5D Products
7.1. EQ-5D-5L Translations and other formats
The EQ-5D-5L self-complete paper version is currently available in more than
100 different language versions. Likewise, although the EQ-5D-5L was primarily
designed as a pen-and-paper, self-complete instrument, it is now available in
alternative formats and modes of administration, and in multiple translations:
• PDA • Telephone
• Proxy paper • Web
• Tablet
If you want to know whether an EQ-5D-5L version exists for your country, please
consult the EuroQol website.
If you want to know whether an EQ-5D-3L language version exists for your
country, please consult the EuroQol website.
If you want to know if there is an EQ-5D-Y version appropriate for your country,
please consult the website.
5
Wille N, Badia X, Bonsel G, Burström K, Cavrini G, Devlin N, et al. Development of the EQ-5D-Y: a child-friendly version of
the EQ-5D. Qual Life Res. 2010;19(6):875-86
Page | 19
7.3. Translation process
All translation/adaptations of EQ-5D are produced using a standardized translation protocol that
conforms to internationally recognized guidelines. These guidelines aim to ensure equivalence to the
English ‘source’ version and involve a forward/backward translation process and cognitive debriefing.
Only the EuroQol Executive Office can give permission for a translation to be performed and
translations can only be stamped as official if they are performed in cooperation with EuroQol Group
reviewers.
Page | 20
8. FAQs
preceding days or weeks, although EQ-5D-3L
8.1. General has been tested in recall mode. An early
decision taken by the EuroQol Group
Is the EQ-5D-5L instrument validated?
determined that health status measurement
The EQ-5D-5L has been validated in a diverse
ought to apply to the respondent’s immediate
patient population in 6 countries, including 8
situation - hence the focus on ‘your health
patient groups with chronic conditions
today’.
(cardiovascular disease, respiratory disease,
depression, diabetes, liver disease,
Can I use only the EQ-5D-5L descriptive
personality disorders, arthritis, stroke) and a
system or only the EQ VAS?
student cohort. Redistribution of responses
We cannot advise this. EQ-5D-5L is a 2-part
from the EQ-5D-3L to EQ-5D-5L was
instrument so if you only use one part you
validated for all dimensions and all levels. The
cannot claim to have used EQ-5D-5L in your
measurement properties of EQ-5D-5L were
publications.
superior to the EQ-5D-3L in terms of
feasibility, ceiling effects, discriminatory power
How long should the EQ VAS be?
and convergent validity. Reliability and
Officially, for paper versions, the EQ VAS
responsiveness remain to be assessed for the
scale should be 20 cm. All methodological and
EQ-5D-5L.
developmental work has been carried out
using this length. To ensure that you print the
Can the EQ-5D-5L now be used instead of
correct length, make sure your paper size is
the EQ-5D-3L?
set at A4 and the box in your printing
Yes, the EQ-5D-5L can be used instead of the
instructions labelled ‘scale to paper size’ is set
EQ-5D-3L but please bear in mind that
at ‘no scaling’.
currently there are no value sets available that
are directly elicited from representative
Can I publish our study using EQ-5D?
general population samples.
Yes, you are free to publish your results. If you
are reproducing the EQ-5D-5L in an appendix
For the purpose of comparing EQ-5D results
we request that you use the sample version of
with previous research based on the EQ-5D-
EQ-5D-5L and that the following text plus the
3L, or when used in longitudinal research
date the version was translated is included in
based on the EQ-5D-3L, it is advised to use
the footer: © 1990 EuroQol Group. EQ-5D™
the EQ-5D-3L, or both the EQ-5D-3L and EQ-
is a trade mark of the EuroQol Group.
5D-5L
Page | 21
problems on the mobility dimension, no General population value sets vs. patient
problems on the self-care and usual activities population value sets
dimensions, severe pain or discomfort, and If you want to undertake a utility analysis you
moderate problems on the anxiety/depression will need to use a value set. Generally
dimension. These health states can be speaking, utility analysis requires a general
converted to a single index value using the population-based value set (as opposed to a
crosswalk link function based on the existing patient-based set). The rationale behind this is
value sets for the EQ-5D-3L described in that the values should reflect the preferences
Section 4 above. These EQ-5D-3L value sets of local taxpayers and potential receivers of
are based on VAS or TTO valuation healthcare. Additionally, patients tend to rate
techniques, and reflect the opinion of the their health states higher than the general
general population. The EQ VAS self-rating population because of coping or other factors,
records the respondent’s own assessment of and may therefore underestimate their need
their health status and are therefore not for healthcare. EQ-5D-5L value sets are
representative of the general population. therefore based on general population values.
Since, the EQ VAS scores are anchored on
100 = the best health you can imagine and 0 = Multinational clinical trials
the worst health you can imagine these scores Information relating to EQ-5D-5L health states
are not suitable for QALY calculations, gathered in the context of multinational trials
whereas the value sets are anchored on may be converted into a single index value
11111 = 1 and dead = 0 and can therefore be using the crosswalk link function based on the
used in QALY calculations. available EQ-5D-3L value sets as described in
Section 4 above. There are different options
What is the difference between the VAS available to do this using appropriate value
and TTO techniques? sets-however the choice depends on the
The difference between the TTO- and VAS- context in which the information will be used
based value sets is that the techniques used by researchers or decision makers. In cases
to elicit the values on which the models are where data from an international trial are to be
based differ. In the TTO task, respondents are used to inform decision makers in a specific
asked to imagine that they will live in a certain country, it seems reasonable to expect
health state (e.g. 33333) for 10 years and decision makers to be interested primarily in
have to specify the amount of time they would value sets that reflect the values for health
be willing to give up to live in full health states in that country. So for example, if
instead (i.e. 11111). For example, someone applications for reimbursement of a drug are
might find 8 years in 11111 equivalent to 10 rolled out from country to country, country-
years in 33333. The VAS technique on the specific value sets should be applied and
other hand, asks people to indicate where, on reported in each pharmaco-economic report.
a vertical thermometer-like scale ranging from This is no different from the requirement to
best imaginable health to worst imaginable use country specific costs. In the absence of a
health, they think a health state should be country-specific value set, the researcher
positioned. should select another set of values for a
population that most closely approximates that
Page | 22
country. Sometimes however, information amend, convert, translate, publish or make
about index values ('utilities') is required to available in whatever way (digital, hard-copy
inform researchers or decision makers in an etc.) the EQ-5D-5L and related proprietary
international context. In these instances, one materials. The EuroQol Group stresses that
value set applied over all health states data is any and all copyrights in the EQ-5D, its
probably more appropriate. The decision (digital) representations, and its translations
about which value set to use will also depend exclusively vest in the EuroQol Group. EQ-
on whether the relevant decision making body 5D™ is a trade mark of the EuroQol Group.
in each country specifies any requirements or
preferences in regard to the methodology
used in different contexts (e.g. TTO, standard
gamble (SG), VAS or discrete choice
modelling (DCM)). These guidelines are the
topic of an on-going, international debate but
the EuroQol Group website is planning to
provide a summary of health care decision-
making bodies internationally together with
their stated requirements regarding the
valuation of health states. Detailed information
on valuation protocols together with guidelines
on which value set to use and tables of all
available value sets has been published by
Springer in: EuroQol Group Monograph
series: Volume 2: EQ-5D value sets:
inventory, comparative review and user guide’
(see section 8 for more information).
8.2. Registration
8.3. Copyright
Page | 23
9. References and Publications
2. Brooks R (1996). EuroQol: the current state of play. Health Policy 37(1):53-72.
3. Dolan P (1997). Modeling valuations for EuroQol health states. Med Care 35(11):1095-108.
4. Roset M, Badia X, Mayo NE (1999). Sample size calculations in studies using the EuroQol 5D.
Qual Life Res 8(6):539-49.
5. Greiner W, Weijnen T, Nieuwenhuizen M, et al. (2003). A single European currency for EQ-5D
health states. Results from a six country study. Eur J Health Econ; 4(3):222-231.
6. Shaw JW, Johnson JA, Coons SJ (2005). US valuation of the EQ-5D health states: development
and testing of the D1 valuation model. Med Care; 43(3): 203-220.
7. Herdman M, Gudex C, Lloyd A, Janssen MF, Kind P, Parkin D, Bonsel G, Badia X. Development
and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Quality of Life
Research.
9. The development of new research methods for the valuation of EQ-5D-5L. European Journal of
Health Economics. Volume 14, Issue 1 Supplement, July 2013.
1. The EuroQol Group (1990). EuroQol-a new facility for the measurement of health-related
quality of life. Health Policy 16(3):199-208.
2. Brooks R (1996). EuroQol: the current state of play. Health Policy 37(1):53-72.
If you used a value set in your study you can also include a reference to the publication regarding
that value set. The appropriate references for the value sets can be found in the EQ-5D Value Sets
Monograph and in the value set summary documents that can be ordered from the EuroQol
Executive Office.
Page | 24
EQ-5D value sets: Inventory, comparative review and user guide. Eds. Szende A, Oppe M,
Devlin N. EuroQol Group Monographs Volume 2. Springer, 2006.
This book provides an essential guide to the use of the EuroQol Group’s value sets for anyone
working with EQ-5D data and can be obtained from Springer at www.springeronline.com.
EQ-5D concepts and methods: a developmental history. Eds Kind P, Brooks R, Rabin R.
Springer, 2005.
This book is a collection of papers representing the collective intellectual enterprise of the EuroQol
Group and can be obtained from Springer at www.springeronline.com.
The Measurement and valuation of health status using EQ-5D: A European perspective. Eds
Brooks R, Rabin R, de Charro F. Kluwer Acacemic Publishers, 2005
This book reports on the results of the European Union-funded EQ-net project which furthered the
development of EQ-5D in the key areas of valuation, application and translation. The book can be
obtained from Springer at www.springeronline.com.
Page | 25
EuroQol Group
Marten Meesweg 107
3068 AV Rotterdam
The Netherlands