Whoqol: User Manual
Whoqol: User Manual
Whoqol: User Manual
03
English only
WHOQOL
User Manual
WHOQOL
User Manual
This document is not a formal publication of the World Health Organization (WHO) and all rights are reserved
by the Organization. The document may, however, be freely reviewed, abstracted, reproduced or translated
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For authorization to translate the work in full, and for any use by commercial entities, applications and inquiries
should be addressed to the Department of Mental Health, World Health Organization, 1211 Geneva 27,
Switzerland, which will be glad to provide the latest information on any changes made to the text, plans for
new editions, and the reprints, adaptations and translations that may already be available.
The views expressed herein by named authors are solely the responsibility of those authors.
TABLE OF CONTENTS
INTRODUCTION Page
Purpose of this Manual 1
Summary of WHOQOL Instruments 1
Uses of the WHOQOL Instruments 1
Outline of Chapters 1
REFERENCES 48
INTRODUCTION
PURPOSE OF THIS MANUAL
This manual aims to describe the development and use of the WHOQOL-100 and WHOQOL-
BREF quality of life assessments, giving the reader a background on the development of the
WHOQOL instruments, describing their psychometric properties and facilitating administration and
scoring.
OUTLINE OF CHAPTERS
The initial chapter describes the rationale for the development of the WHOQOL pilot instrument and
the refinement of the original WHOQOL pilot instrument to produce the WHOQOL-100. Chapter 2
reports on the psychometric properties of the WHOQOL-100, whilst Chapter 3 gives guidelines for the
preparation and administration of the WHOQOL-100. Chapter 4 serves as a resource for researchers
who wish to develop the WHOQOL-100 in a new language version, whilst Chapters 5 and 6 outline
the development, psychometric properties and administration procedures for the WHOQOL-BREF.
Finally, Chapter 7 outlines some of the proposed uses for the WHOQOL-100 and WHOQOL-BREF
and Chapter 8 details their scoring procedures.
CHAPTER ONE - DEVELOPMENT OF THE WHOQOL-100
INTRODUCTION
The WHOQOL-100 was produced from an original WHOQOL pilot assessment. This chapter briefly
describes the rationale for the development of the WHOQOL pilot assessment, its conceptual
background and the method used in its development. It also describes the development of the
WHOQOL-100 from the WHOQOL pilot assessment.
Second, most measures of health status have been developed in North America and the UK, and the
translation of these measures for use in other settings is time-consuming and unsatisfactory for a
number of reasons (Sartorius and Kuyken, 1994; Kuyken, Orley, Hudelson and Sartorius, 1994).
Third, the increasingly mechanistic model of medicine, concerned only with the eradication of disease
and symptoms, reinforces the need for the introduction of a humanistic element into health care.
Health care is essentially a humanistic transaction where the patient's well-being is a primary aim. By
calling for quality of life assessments in health care, attention is focused on this aspect of health, and
resulting interventions will pay increased attention to this aspect of patients' well-being. WHO's
initiative to develop a quality of life assessment arises, therefore, both from a need for a genuinely
international measure of quality of life, and restates its commitment to the continued promotion of an
holistic approach to health and health care, as emphasised in the WHO definition of health as “A state
of physical, mental and social well-being, not merely the absence of disease and infirmity”.
CONCEPTUAL BACKGROUND
Due to the lack of a universally agreed upon definition of quality of life, the first step in the
development of the WHOQOL was to define the concept. Quality of life is defined by the WHO as
“individuals' perceptions of their position in life in the context of the culture and value systems in
which they live and in relation to their goals, expectations, standards and concerns”. It is a broad
ranging concept incorporating in a complex way the persons' physical health, psychological state, level
of independence, social relationships, personal beliefs and their relationships to salient features of the
environment.
This definition reflects the view that quality of life refers to a subjective evaluation, which is embedded
in a cultural, social and environmental context. (As such, quality of life cannot be equated simply with
the terms "health status", "life style", "life satisfaction", "mental state" or "well-being"). Because the
WHOQOL focuses upon respondents' "perceived" quality of life, it is not expected to provide a means
of measuring in any detailed fashion symptoms, diseases or conditions, nor disability as objectively
judged, but rather the perceived effects of disease and health interventions on the individual’s quality
of life. The WHOQOL is, therefore, an assessment of a multi-dimensional concept incorporating the
individual's perception of health status, psycho-social status and other aspects of life.
A second feature of the WHOQOL method was the iterative input of quality of life researchers and the
consolidation and revision of this information at grassroots level at each stage of the instrument's
development. This ensured that both existing expertise in quality of life assessment and the views of
practising health professionals and patients were represented in the construction of the instrument. In
quality of life assessment, where there is an ever growing acknowledgement that the patients'
viewpoint is paramount (Smart and Yates, 1987; Calman, 1987; Breslin, 1991; Gerin, Dazord, Boissel
et al, 1992; Patrick and Erikson, 1993) the acceptability of the measure to patients is fundamental.
Furthermore, because health professionals and researchers are the most likely to use the WHOQOL
instrument, it is important that the instrument is acceptable to these groups as well.
A third feature of the WHOQOL method is the use of a tried and tested WHO translation method.
WHO has accrued considerable experience in translating health status measures. This expertise was
used throughout the WHOQOL and the translation methodology is described in Chapter 5.
STEPS IN THE DEVELOPMENT OF THE WHOQOL-100
The WHOQOL development process was made up of several stages (see Table 1.2).
1) CONCEPT CLARIFICATION
In the first stage, concept clarification involved an international collaborative review to establish an
agreed upon definition of quality of life. Following extensive review of the literature, consultants and
investigators from field centres proposed several broad domains assumed to contribute to an
individual’s quality of life. Each domain was further divided into a series of specific areas (facets)
summarising each particular domain.
2) QUALITATIVE PILOT
In the second stage, the qualitative pilot involved 1) the exploration of the quality of life construct
across cultures, 2) definition of the facets to be assessed, 3) generation of a global question pool
and 4) development of equivalent response scales for different language versions of the WHOQOL.
Focus groups were therefore run in 12 field centres in order to achieve these aims. This work was
carried out simultaneously in each different cultural setting worldwide, with input and technical
support from the WHO co-ordination group in Geneva.
Focus groups in each centre generated suggestions for facets of life that they considered contributed
to its quality. Following free discussion, each group was presented with the list of facets derived
from a review of existing scales as well as elaborate discussions among members of the WHOQOL
group on relevant aspect of a person’s life. In this way they could indicate whether or not they
considered any of these to be important, had they not done so already. These suggestions were
arranged as a set of facets and for each facet a definition was written. The range and definition of
facets were developed iteratively, such that each centre involved in the project considered and
reconsidered the proposals from their own centres, from other centres, and from the co-ordinating
team. Twenty nine facets were developed for the WHOQOL pilot (see Table 1.3; facet descriptions
for the 25 facets retained in the WHOQOL-100 are given in Appendix 1).
In each centre the facet definition were translated following the WHOQOL translation methodology
outlined in chapter 4.
Separate focus groups comprising individuals with a disease or impairment currently using health
services, healthy participants and health personnel were assembled in each centre to deliberate on
the facets and to propose questions. The inclusion of facets was based, therefore, on a consensus
within and between cultures among health professionals, persons from the general population who
were “healthy” and persons who were in contact with health services because of disease or
impairment (See Appendix 6).
The focus group also proposed potential questions for consideration of the item writing group.
Following the focus group work, question writing panels were established in each of the 12 field
centres who participated in this phase of the work. The question writing panel started its work with
reviewing the questions proposed by focus group members and then added additional questions.
Questions were written in the local language of the field centre. A maximum of twelve questions
was written in each centre for each facet. These questions were then translated into English.
TABLE 1.3 - WHOQOL PILOT ASSESSMENT DOMAINS AND FACETS
Domain I Physical
1 Pain and discomfort
2 Energy and fatigue
3 Sexual activity
4 Sleep and rest
5 Sensory functions
Domain II Psychological
6 Positive feelings
7 Thinking, learning, memory and concentration
8 Self-esteem
9 Bodily image and appearance
10 Negative feelings
Domain V Environment
20 Freedom, physical safety and security
21 Home environment
22 Work satisfaction
23 Financial resources
24 Health and social care: accessibility and quality
25 Opportunities for acquiring new information and skills
26 Participation in and opportunities for recreation/ leisure activities
27 Physical environment (pollution/noise/traffic/climate)
28 Transport
Domain VI Spirituality/religion/personal beliefs
Three more centres (Barcelona, Delhi and Tokyo) joined at this stage of the WHOQOL development.
They translated the core questions, ran focus groups which ensured the language of the questions was
locally appropriate, and in the case of Delhi and Tokyo, suggested national questions which they added
to their pilot instrument for testing.
The WHOQOL coordinating group then pooled all questions from all centres to make up a "global
question pool" of some 1800 questions. A content analysis of the questions identified many
semantically equivalent questions (e.g. "How much of the time are you tired?" and "How often are
you tired?"), thus reducing the number of questions in the global question pool. Judgements of
semantic equivalence were carried out by consensual agreement in a small working group, and were
subsequently reviewed by all principal investigators. Questions were then carefully examined to see
to what extent they met the criteria for WHOQOL questions (see Appendix 2). This led to a
considerable reduction in the number of questions in the global pool to around 1000 questions. The
principal investigator in each of the field centres then rank-ordered the questions for each facet
according to "how much it tells you about a respondent's quality of life in your culture" as judged
by the discussions in the focus groups. From the combined rankings for all centres, 236 questions
were selected for the WHOQOL pilot instrument.
As a final step, it was decided to use five-point Likert scales for all items in the instrument. To
ensure equivalence across WHOQOL field centres, a visual analogue scaling methodology was
used which specified the anchor points for the different types of response scales to be used in the
instrument (that is, using English anchor points scales identified by “Very satisfied - Very
dissatisfied”, “Not at all - Extremely”, “Not at all - Completely”, and “Never - Always”. The scales
with anchor points “Very poor – Very good” and “Very unhappy – Very happy” were also included
by some centres), and then obtained the best descriptors for the 25%, 50% and 75% points between
the two anchors for each response scale (see pp. 31-32 for further details). Four types of response
scale were included to assess intensity, capacity, frequency and evaluation (see Chapter 4 and
Appendix 1 for further information; for a full review of this method see Szabo,S., Orley,J. and
Saxena,S. on the behalf of the WHOQOL Group, 1997).
This series of steps enabled a pilot WHOQOL comprising 236 questions addressing 29 facets of
quality of life as well as overall quality of life and health to be constructed in readiness for
translation (where not already in the local language) and field testing. There were approximately
eight questions per facet. The number of questions contributed by each field centre is shown in
Appendix 3. The 29 facets were grouped into six major domains as shown in Table 1.3.
IMPORTANCE RATINGS
Forty one standardised questions were added by the WHOQOL coordinating group to assess the
importance attributed by the respondents to the selected WHOQOL facets, with a view to possible
weighting of facets and domains. Items corresponded to the 29 facets of the WHOQOL pilot
version, with some facets having more than one item to reflect their content. These items use a five
point Likert response scale and are scaled in a positively framed direction. To date, the importance
items have not been used to weight the WHOQOL facets or domain scores. Importance ratings
included in the WHOQOL-100 are given in Appendix 7.
3) DEVELOPMENT PILOT
In the third stage, the development pilot testing involved the administration of the WHOQOL pilot
form in the 15 culturally diverse field centres. The format of the pilot WHOQOL was standardised
with respect to instructions, headers and question order. All questions asked about the two weeks
prior to administration of the questionnaire. Questions in the pilot instrument were mainly grouped
by response format, for example, with all of the “Satisfaction” items grouped together. However,
because some facets needed to be elaborated by a short description (Viz., Mobility, Spirituality /
religion / personal beliefs, Work capacity, and Work satisfaction), questions addressing these facets
were grouped on a facet-by-facet basis.
NATIONAL ITEMS
Field centres were free to include up to two additional national/regional questions per facet, in a
separate questionnaire, if the coverage of the facet by core questions was felt to be inadequate in the
culture of the field centre. These were normally some of the questions that had been suggested by
the focus groups in that country, but not included in the 236 core questions. For example, in
Thailand, where the vast majority of the population are Buddhists, the additional national questions
included the following question for the facet Negative feelings, "How well are you able to rid
yourself of negative feelings through meditation?" This question would clearly be inappropriate to
most respondents in other settings, but addresses an important aspect of psychological well-being in
Thailand.
Domain II Psychological
4 Positive feelings
5 Thinking, learning, memory and concentration
6 Self-esteem
7 Bodily image and appearance
8 Negative feelings
Domain V Environment
16 Physical safety and security
17 Home environment
18 Financial resources
19 Health and social care: accessibility and quality
20 Opportunities for acquiring new information and skills
21 Participation in and opportunities for recreation/ leisure activities
22 Physical environment (pollution/noise/traffic/climate)
23 Transport
INTRODUCTION
This chapter reports on the field testing and psychometric properties of the WHOQOL-100. It
reports on global data from all centres participating in the field trial version of the WHOQOL-100.
Psychometric data on individual centres can be requested by contacting the field centres directly
(see Appendix 5 for contact information on field centres).
TABLE 2.1 - DATA AVAILABLE ON THE FIELD TRIAL VERSION OF THE WHOQOL-
100
Centre n % total
La Plata, Argentina 421 5.1
Bangkok, Thailand 435 5.2
Beer Sheva, Israel 459 5.5
Madras, India 567 6.8
Melbourne, Australia 349 4.2
New Delhi, India 82 1.0
Panama City, Panama 115 1.4
Seattle, USA 192 2.3
Tilburg, The Netherlands 785 9.5
Zagreb, Croatia 96 1.2
Tokyo, Japan 188 2.3
Harare, Zimbabwe 149 1.8
Leipzig/ Mannheim, Germany 1103 12.1
Barcelona, Spain 552 6.5
Bath, England 104 1.3
St Petersburg, Russia 70 0.8
Porto Alegre, Brazil 82 1.0
China 1431 17.3
Hong Kong 847 10.2
Total 8294 100
SAMPLE POPULATION USED TO DETERMINE PSYCHOMETRIC PROPERTIES
All data collected by centres during the field trial of the WHOQOL-100, and that were available by
July 1997, were used to determine the psychometric properties of the WHOQOL-100. Data are
included from 19 field centres, of which fourteen had participated in the pilot WHOQOL. The
number of subjects who participated from each field centre is shown in Table 2.1. The total number
of subjects for which data were available was 8294. There is considerable variation in the sample
size from each centre, as apparent from Table 2.1. However, it was considered best to make use of
all the available data at this stage in the WHOQOL development.
STATISTICAL ANALYSIS
Scoring methods for facets and domains are shown in Chapter 8. Data analyses were carried out
using SPSS (Windows) Version 7. Internal consistency, that is, the extent to which each facet
forms a reliable scale, was assessed using Cronbach alpha. Discriminant validity for items was
determined via t-tests to distinguish differences between ill and well subjects. Test-retest reliability
was assessed using Pearson r correlations. Contribution of domain scores to assessing quality of
life was assessed using multiple regression. Confirmatory factor analysis of the facets included in
the WHOQOL-100 was carried out using the EQS package Version 5.0 (Bentler & Wu, 1995).
The hypothetical structures of the six domains are shown in Figure 2.2. For each domain, the
models assume there is only one factor upon which all facets load. Table 2.2 shows tests of the
domain structures carried out for each of the domains separately, for both the global dataset and
each of the ill and well sample populations. The global dataset and both ill and well sample
populations fitted these models well for each domain (see Table 2.2). Parameter estimates for the
global dataset, shown in Figure 2.2, indicate that all facets within domains contributed significantly
to the domain. As shown in Table 2.2, multiple sample analysis for all domains displayed
appropriate CFIs above 0.9 in all cases, suggesting parameter estimates to be invariant across ill and
well population groups for all domains.
DISCRIMINANT VALIDITY
Following confirmation of the six domain structure, mean scores for facets and domains were
calculated for both ill and well sample populations (see Table 2.3). Descriptive statistics for age and
gender for these groups are shown in Table 2.4. The WHOQOL-100 discriminated between ill and
well respondents on all six domains. Largest differences between these groups were found for the
level of independence domain, with scores on average 18.5% lower for ill subjects than for well
subjects, compared with the environment domain where differences between groups were in the
region of 5% (see Table 2.3).
Level of Independ. 68.5 ± 19.8 60.9 ± 19.6 79.4 ± 14.3 48.3 .001
Mobil 68.2 ± 23.5 62.7 ± 23.8 75.9 ± 20.7 26.1 .001
Activ 68.6 ± 21.8 62.1 ± 22.6 77.6 ± 17.0 34.6 .001
Medic 28.6 ± 28.2 39.2 ± 28.2 13.2 ± 19.5 48.2 .001
Work 65.9 ± 25.1 58.0 ± 26.0 77.3 ± 18.7 38.2 .001
Social relations 63.6 ± 15.8 60.6 ± 16.1 67.7 ± 14.3 20.4 .001
Relat 69.9 ± 17.4 67.1 ± 18.1 74.0 ± 15.6 18.2 .001
Supp 61.0 ± 20.6 58.2 ± 20.9 64.5 ± 19.5 13.5 .001
Sex 60.2 ± 20.8 56.7 ± 21.0 64.7 ± 19.1 16.8 .001
TABLE 2.4 - DESCRIPTIVE STATISTICS FOR ILL AND WELL SAMPLE POPULATIONS
INTERNAL CONSISTENCY
Cronbach alpha values for each of the six domain scores ranged from .71 (for domain 4) to .86 (for
domain 5), demonstrating good internal consistency (see Table 2.5). Cronbach alpha values for domains
1 and 4 should be read with caution as they were based on three scores rather than the minimum four
generally recommended for assessing internal reliability.
TEST-RETEST RELIABILITY
Data used to assess test-retest reliability included a majority of well subjects (87% of respondents)
from four centres participating in the field trial of the WHOQOL-100. These were Bath (n=90),
Harare (n=100), Tilburg (n=116) and Zagreb (n=85). In all centres, respondents were university
students, with the exception of Harare, where subjects were random samples of ill (n=50) and well
(n=50) respondents. The interval between test and retest ranged from 2-8 weeks. Correlations
between items at time points one and two were generally high (see Table 2.5), ranging from .68 for
the Safety facet to .95 for Dependence on Medication. This suggests that the WHOQOL-100
produces comparable scores across time in cases where no interventions or life-altering events have
occurred. However, more test-retest reliability data need to be collected for the measure.
TABLE 2.6 - MULTIPLE REGRESSION MODEL USING GENERAL HEALTH AND QUALITY OF LIFE
FACET AS THE DEPENDENT VARIABLE AND DOMAIN SCORES AS PREDICTOR VARIABLES (ALL
BETA VALUES SIGNIFICANT AT P<.001, EXCEPT * WHERE P=.02)
WHOQOL-100 ADMINISTRATION
The WHOQOL-100 should be self-administered if respondents have sufficient ability to read;
otherwise, interviewer-assisted or interviewer-administered forms should be used. The standardised
instructions given in Appendix 4 should be printed on the cover sheet of the WHOQOL questionnaire,
or, when interviewer-administered, should be read out to respondents. The response scale included in
the instructions is an example only and centres should substitute their own intensity response scale as
an example.
A time frame of two weeks was used in piloting work with the WHOQOL instrument. It is
recognised, however, that different time frames may be necessary for particular uses of the
instrument in subsequent stages of work. For example, in the assessment of quality of life in
chronic conditions such as back pain and arthritis, a longer time frame such as four weeks may be
preferable. In the assessment of patients receiving chemotherapy, the treatment cycles should be
considered to establish and control for responsiveness and any side effects that are anticipated.
Furthermore, the perception of time is different in different cultural settings, and in the
interpretation of data this is something that should be explicitly acknowledged.
USER AGREEMENT
The WHOQOL-100 assessment has been undergoing development since 1991 and the WHOQOL-
BREF since June 1996. Both are subject to further refinement in the future. This includes periodic
modifications to the user manuals as additional data become available in order to update normative
data and psychometric properties of the instrument (i.e. reliability and validity data). Users ought
therefore to consult WHO, Geneva for information on manual updates. Because we are interested
in updating manuals, we ask WHOQOL-100 and WHOQOL-BREF users for information regarding
studies being carried out. This information should be sent to:
The WHOQOL Project
Programme on Mental Health
WHO
1211 Geneva 27
Switzerland
No users of the WHOQOL-100 or the WHOQOL-BREF are authorised to make substantive
changes to the assessments. If during use of the WHOQOL assessments, users have difficulty in
administering the instrument (i.e. the language is not appropriate for the population being tested),
they are requested to contact the above address.
CHAPTER 4 - DEVELOPMENT OF THE WHOQOL-100 IN A NEW LANGUAGE
INTRODUCTION
The language versions of the WHOQOL that are currently available enable multicentre quality of
life research in the settings where development work has taken place. However, there are many
further settings where there is a genuine need for an international measure of quality of life, and it is
hoped that development work will be extended to these additional cultural settings.
This chapter therefore serves as a resource for those wishing to develop the WHOQOL-100 in new
cultural settings, where WHOQOL piloting work has not already been conducted; it describes the
process necessary to develop a WHOQOL-100, including a description of the translation methodology
that should be used.
2. Are the stated purposes of the WHOQOL-100 compatible with the requirements in the target
culture?
3. Are suitable instruments for the assessment of quality of life in the target culture/language with
adequate psychometric properties of validity, reliability and responsiveness to change
available? If so,
the development of the WHOQOL-100 might not be warranted.
4. Is the approach of the WHOQOL-100 compatible with that of the investigators, and proposed
centre that would develop the region/language version of the WHOQOL?
5. Does the prospective centre have access to funding, and other necessary resources to carry out
the work?
6. Is the work outlined in this protocol and the main study protocol feasible in the prospective
centre? This includes having a principal investigator who can communicate with the
WHOQOL coordinating group in English, having access to patients with a range of
health problems for research purposes, and expertise in focus group methodology.
If these conditions apply in a prospective centre, and approval for the development of the new
WHOQOL-100 region/language version has been given by the WHOQOL Group at WHO Geneva,
work on the development of a regional/language version of the WHOQOL-100 can proceed. A
study team should be assembled, and all members of this team fully familiarised with the aims and
assumptions of the WHOQOL project, the characteristics, structure and proposed uses of the
instrument, and development work to date on the WHOQOL-100. This should be done in close
collaboration with the WHOQOL coordinating group, who will seek to establish high levels of
standardisation between any new centre and centres where the WHOQOL-100 has already been
developed, or work on its development is ongoing.
The translation process has a number of steps. The source instrument is translated into the target
language by one or two translators, if two, they can consult one another in the course of their work.
These translators should have a clear and detailed understanding of the instrument, and the population
who will use the instrument. This will increase the likelihood both that the instrument is translated
appropriately, and that the language used in the translated document matches closely the language
usage of the target group.
The bilingual panel then reviews the translation, looking for any inconsistencies between the source
language version and the translated document, and discussing and resolving issues related to the
maintenance of the integrity of the source instrument in terms of conceptual, semantic and technical
equivalence.
A group of monolingual individuals, unfamiliar with the instrument, and representative of the
population for whom the instrument is intended, then "tests" the document by reading through it,
looking for aspects of the translation which are not clearly comprehensible or are ambiguous in the
target language. The monolingual group should also be asked to comment on whether the style of
questioning and format of the questionnaire is acceptable. The presentation of the instrument to the
monolingual group is of considerable importance because they rely only on the text of the target
language, and have no prior idea of the concepts the questions were designed to address, nor the form
or content of the questions in the source language. Monolingual review can be done in a focus group
situation, where focus group participants arrive having read through the instrument, and discuss the
instrument in session. This would involve detailed discussion of the instrument's instructions, form
and content. Ideally such monolingual focus groups would be moderated by a member of the bilingual
panel.
The bilingual group then considers the comments of the monolingual group and, wherever these
accurately reflect the source document, incorporates them into the translated document, ensuring that
the document is grammatically correct in the target language.
The translated document is then back-translated into the original language by the back-translator. This
translator should be briefed about his/her place in the translation methodology being used, and told that
he/she is translating a measure concerned with health. This ensures the translator's work is appropriate
to the methodology without introducing bias into the process. The back-translator must not see a copy
of the original English version before completing the translation.
The bilingual group then considers the original and back-translated documents. Any significant
differences should lead to iterations in the process until an acceptable conceptual, semantic and
technical equivalence has been achieved.
CONDUCT OF FOCUS GROUPS
Following translation of the core questions and facet definitions, focus groups should be convened
in the new centre to:
1. Check on the validity and comprehensiveness of the domain and facet structure in the target
culture
2. Evaluate the comprehensiveness of the existing core items represented in the WHOQOL
3. Generate any additional items that may be necessary and
4. Gather information about the translatability of certain concepts and questions.
A series of focus groups should be conducted separately with health personnel and patients. The
focus group participants should read the facet definitions and then look at the core questions
provided by WHO. On the basis of their examination of the facet definitions and core questions
addressing that definition, participants should suggest areas/questions not adequately covered by the
WHO core items. It is not the job of focus groups to suggest modifications to existing items, nor
the deletion of items felt to be unnecessary, but rather to suggest areas inadequately covered. A
feature of the WHOQOL methodology is that any national items will have to compete with the core
items derived from all other centres to be retained in the instrument.
The health personnel focus groups should represent the cross section of health personnel who are
likely to be involved in patient care in that field centre. This may include professionals such as
doctors, nurses, social workers, health and clinical psychologists, occupational therapists,
physiotherapists and speech therapists. The health personnel group is convened to discuss the
WHOQOL in relation to the quality of life of the patients under their care.
Patient focus groups should be made up of a sample of individuals who are representative of the
population of patients in the field centre. This applies to the following demographic features:
gender, age, educational background, socio-economic group, marital status, health status and ethnic
group. This group should comprise patients who are in some way in contact with local health
services. An attempt should be made to include individuals with acute and chronic disorders, and
outpatients and inpatients. An untypical sample (e.g. exclusively psychiatric patients, diabetic
patients or cancer patients) would be unacceptable. Each focus group should comprise 6-8 people.
However, this number may be subject to cultural variation. In general, if smaller numbers of
participants are used per focus group, then more focus groups will need to be run.
A minimum of two focus groups with health personnel and two focus groups with patients should
be conducted. Most importantly, it is essential that enough focus groups are run so that the data
from these groups can confidently be said to be representative of the target population. If the data
from the two groups are dissimilar, more focus groups need to be conducted until a consistent
pattern is observable. The interview schedule to be used in the running of these focus groups is
included in Appendix 6.
Making full use of focus group transcripts, the question writing panel frames any additional
questions for facets not comprehensively covered by the existing core questions. The expanded
group of questions from which the core questions are derived should be consulted to examine if
questions already exist addressing the issues considered by focus group participants to be
inadequately covered. Questions should be framed in the local language in which the instrument
will be used. The criteria outlined in Appendix 2 should be used by the question writing panel in
their work.
It should be remembered that "national questions" will only be finally accepted if they can be shown to
tap into alternative aspects of facets or domains not adequately covered by the existing items and
facets. The analysis of the pilot data must show that they contribute significantly to the assessment of
quality of life and are not merely duplications of existing items or facets. In the case of proposed
national items exploring alternative aspects of facets and domains, it is advisable for the centre to add
several items so that the new concept has some weight in the subsequent analyses. The data from one
item are likely to insufficiently represent a concept. An example of successful national questions is a
set from a module in Chinese, used with immigrants into Australia. These questions tapped into
feelings of alienation, discrimination, etc. Sufficient items were included in the pilot to enable a new
facet to be considered on this topic.
Please consult with WHO Geneva about the issue of national questions before finalising your pilot
questionnaire, but do remember to get focus groups and the question writing panel to suggest a variety
of questions (and not just one item) for any new facet (or aspect of a facet not yet covered).
1. Anchor points are translated into the language of the field centre, being careful to maintain both
the exact meaning and magnitude.
2. A list of at least 15 descriptors which should cover the complete range from least to most, is
compiled in the language of the new centre for each response scale from dictionaries, relevant
literature, and other instruments.
3. For each response scale a minimum of 20 lay subjects, representative of the health care users or
possible users in the field centre, are asked to place a mark on a 10 cm line for each descriptor,
according to where they think the descriptor lies in relation to the two anchor points. The series
of descriptors for a given response scale are presented in random order, and a fresh line is used
for each descriptor.
4. To select descriptors for each response scale, mean distances for the 20+ subjects are
calculated. To select the 25% descriptor, the mean falling between 20 mm and 30 mm is
selected, to select the 50% descriptor the mean falling between 45 mm and 55 mm is selected
and to select the 75% descriptor the mean falling between 70 mm and 80 mm is selected. If
there are several descriptors whose mean score falls within the given range, the descriptor with
the lowest standard deviation should be selected.
5. To check on the ordinality of response scales, a small group of respondents should be asked to
rank order descriptors from less to more for each response scale in a card sort exercise. Any
problems identified from this card sort exercise should lead to further development of more
appropriate descriptors.
The questionnaire should then be pre-tested with a small sample of health care users to provide
preliminary feedback on: any problems with wording, any problems with the response scales, any
problems with the instructions, the relevance of questions, and respondents' overall impression of
the measure. The pilot should be adjusted on the basis of this pre-test.
Principal investigators should obtain information on the demographic and disease characteristics of
individuals using local health care resources. On the basis of this data, the recruitment in the new
centre should reflect, as far as is possible, the profile of the health care users in the country or region of
the new centre. It is important the group should contain a cross-section of people with very varied
levels of quality of life. One way of attempting this would be to include some people with quite severe
and disabling chronic diseases, some people in contact with health facilities for more transient
conditions, possibly some people attending a family practitioner, and others who would be assumed to
have a relatively "normal" quality of life and are in contact with the health service for reasons that are
not likely to impinge upon their quality of life to any great extent. By sampling patients from a cross-
section of primary care settings, hospitals and community care settings this could most likely be
achieved. In the first pilot exercise there was found to be a significant and progressive lowering of
quality of life from the well group, through out-patients to in-patients.
In some new centres several cultural groups may coexist, often speaking languages other than the
national language. In such cases a feasible option at the piloting stage is to pilot the instrument on
those individuals fluent in the dominant language of the new centre.
CHAPTER 5 - DEVELOPMENT OF THE WHOQOL-BREF
INTRODUCTION
Whilst the WHOQOL-100 allows a detailed assessment of individual facets relating to quality of
life, it may be too lengthy for some uses, for example, in large epidemiological studies where
quality of life is only one amongst many variables of interest. In these instances, assessments will
be more willingly incorporated into studies if they are brief, convenient and accurate (Berwick et al,
1991). The WHOQOL-BREF Field Trial Version has therefore been developed to look at domain
level profiles which assess quality of life (see also The WHOQOL Group, in press). This chapter
outlines its development.
DRAW 2
Pain (item 3)
Energy (item10)
Medication (item4)
Pos.feel (item 5)
Think (item 7)
Psychological
Esteem (item 19 )
Neg.feel (Item26)
Spirituality (item6)
Safety (item 8)
Envir. (item 9)
Item 4 . 50 . 57 . 69
Item 11 . 53 . 54 . 55
Item 26 . 58 . 58 . 55
Item 6 . 57 . 57 . 57
.36
Item 20 .77 .78 .74
Social
Item 22 .61 .60 . 58 Relationships .76 .79 .85
Item 21 . 58 .61 . 57
Item 8
. 51 . 51 . 46
.14
Item 23 .61 .63 .59
.67 .64 .64
Item 12
Item 14 . 56 . 56 . 49
Item 9 . 53 . 55 . 49
Item 25 .57
57 .57
57 61
.61
Three sets of numbers in each pathway show parameter estimates for each of the groups. Estimates from left to right refer to i.
The original pilot of the WHOQOL ii. Original field centres testing the WHOQOL-100 iii. New field centresfield testing the
WHOQOL-100 .
In the new field centres data set, parameter estimates for the error variance allow to covary were asfollows item3 and
item4 =.16,item 3 and item26=.20, item23 and item9= .21. For the two cross-loading parameter estimates were as
follows item8 on the second order factor= .14; item4 on the environment domain =-.36
acceptable comparative fit index (CFI) was achieved when the data was applied to the four domain
structure using confirmatory factor analysis (CFI = .906 and .903, respectively). In the dataset
including new centres field testing the WHOQOL-100, the initial Comparative Fix Index was 0.87,
suggesting that alterations to the model were necessary. When three pairs of error variances were
allowed to covary (i.e. Pain and Dependence on Medication, Pain and Negative feelings, Home and
Physical environment) and two items were allowed to cross-load on other domains (i.e. safety on
the global domain and medication negatively on the environment domain), the comparative fit index
increased to .901. This would suggest that all datasets fitted the hypothetical four domain structure
reasonably well. Figure 5.2 shows how these values varied across the three main datasets.
TABLE 5.2 - PEARSON CORRELATIONS BETWEEN WHOQOL-100 AND WHOQOL-BREF DOMAIN SCORES
INTERNAL CONSISTENCY
Cronbach alpha values for each of the four domain scores ranged from .66 (for domain 3) to .84 (for
domain 1), demonstrating good internal consistency (see Table 5.3). Cronbach alpha values for
domain 3 should be read with caution as they were based on three scores (i.e. the Personal
Relationships, Social Support and Sexual Activity facets), rather than the minimum four generally
recommended for assessing internal reliability.
TABLE 5.3 - INTERNAL CONSISTENCY OF THE WHOQOL-BREF DOMAINS
Cronbach alpha
Orig. data Field data New data
(n=4802) (n=3882) (n=2369)
Physical Health .82 .84 .80
Psychological .75 .77 .76
Social relationships* .66 .69 .66
Environment .80 .80 .80
(*=Only 3 items, therefore Cronbach alphas may not be reliable).
DISCRIMINANT VALIDITY
The WHOQOL-BREF was shown to be comparable to the WHOQOL-100 in discriminating
between the ill and well groups, with similar values and significant differences between ill and well
subjects apparent in all domains (see Table 5.4).
TABLE 5.5 - MULTIPLE REGRESSIONS FOR THE WHOQOL-BREF USING GENERAL HEALTH AND QUALITY OF
LIFE FACET AS THE DEPENDENT VARIABLE AND DOMAIN SCORES AS PREDICTOR VARIABLES
(*= SIGNIFICANT AT P<.001)
% of Overall
QOL & General Final equation standardised beta values*
Data set Health
facet explained Domain 1 Domain 2 Domain 3 Domain 4
Original .31 .31 .16 .21
Field test 62.9 .38 .23 .17 .22
New data 61.5 .33 .29 .13 .20
WHOQOL-BREF ADMINISTRATION
For any new centre not previously involved in either the development or field testing of the
WHOQOL-100, the procedure followed to field test the WHOQOL-BREF should be identical to
that used to field test the WHOQOL-100.
It is anticipated that the WHOQOL assessments will be used in broad-ranging ways. They will be of
considerable use in clinical trials, in establishing baseline scores in a range of areas, and looking at
changes in quality of life over the course of interventions. It is expected that the WHOQOL
assessments will also be of value where disease prognosis is likely to involve only partial recovery or
remission, and in which treatment may be more palliative than curative.
For epidemiological research, the WHOQOL assessments will allow detailed quality of life data to be
gathered on a particular population, facilitating the understanding of diseases, and the development of
treatment methods. The international epidemiological studies that would be enabled by instruments
such as the WHOQOL-100 and the WHOQOL-BREF will make it possible to carry out multi-centre
quality of life research, and to compare results obtained in different centres. Such research has
important benefits, permitting questions to be addressed which would not be possible in single site
studies (Sartorius and Helmchen, 1981). For example, a comparative study in two or more countries
on the relationship between health care delivery and quality of life requires an assessment yielding
cross-culturally comparable scores. Sometimes accumulation of cases in quality of life studies,
particularly when studying less frequent disorders, is helped by gathering data in several settings.
Multi-centre collaborative studies can also provide simultaneous multiple replications of a finding,
adding considerably to the confidence with which findings can be accepted.
In clinical practice the WHOQOL assessments will assist clinicians in making judgements about the
areas in which a patient is most affected by disease, and in making treatment decisions. In some
developing countries, where resources for health care may be limited, treatments aimed at improving
quality of life through palliation, for example, can be both effective and inexpensive (Olweny, 1992).
Together with other measures, the WHOQOL-BREF will enable health professionals to assess changes
in quality of life over the course of treatment.
It is anticipated that in the future the WHOQOL-100 and the WHOQOL-BREF will prove useful in
health policy research and will make up an important aspect of the routine auditing of health and social
services. Because the instrument was developed cross-culturally, health care providers, administrators
and legislators in countries where no validated quality of life measures currently exist can be confident
that data yielded by work involving the WHOQOL assessments will be genuinely sensitive to their
setting.
51
CHAPTER 8 - SCORING OF THE WHOQOL-100 AND THE WHOQOL-BREF
INTRODUCTION
This chapter outlines the procedure for scoring both the WHOQOL-100 and the WHOQOL-BREF.
FACET SCORES
Facets are scored through summative scaling. Each item contributes equally to the facet score. Scaling
is in the direction of the facet, determined by whether the facet is positively or negatively framed.
Significant numbers of facets contain questions which need to be reverse scored (see Appendix 9). For
a positively framed facet, any negatively framed constituent questions are reverse scored. None of the
three negatively framed facets (Pain and Discomfort, Negative Feelings, Dependence on Medication)
has any positively framed questions. Any additional questions included by the new centre and
approved by the WHOQOL Group would contribute to the facet score in the direction in which the
facet is scored. An example of how to score facets is given below:
MISSING DATA
Where more than 20% of data are missing from an assessment, the assessment should be discarded.
Where an item is missing within a facet, the mean of other items in the facet is substituted. Where
more than two items are missing from the facet, the facet score should not be calculated. For the
Physical, Psychological and Social Relationships domains, where one facet score is missing, the
mean of the other facet scores may be substituted. For the Environment domain, up to two missing
facet scores may be substituted with the mean of the other facet scores.
53
SYNTAX FILES FOR AUTOMATIC COMPUTATION OF SCORES USING SPSS
An SPSS syntax file that automatically checks, recodes data and computes domain scores may be
obtained from Professor Mick Power, Department of Psychiatry, Royal Edinburgh Hospital,
Morningside Park, Edinburgh, EH10 5HF, Scotland (e-mail: mj@srv2.med.ed.ac.uk; fax: + 131
447 6860). This syntax file is also given in Appendix 9.
Where more than 20% of data are missing from an assessment, the assessment should be discarded
(see Step 4 in Table 3). Where up to two items are missing, the mean of other items in the domain
is substituted. Where more than two items are missing from the domain, the domain score should
not be calculated (with the exception of domain 3, where the domain should only be calculated if <
1 item is missing). Syntax files for automatic computation of domains are available as for the
WHOQOL-100.
54
REFERENCES
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Software, Inc, CA.
Bergner, M., Bobbitt, R.A., Carter, W.B. et al. (1981). The Sickness Impact Profile: Development and
final revision of a health status measure. Medical Care, 19, 787-805.
Berwick, D.M., Murphy, J.M., Goldman, P.A., Ware, J.E., Barsky, A.J. & Weinstein, M.C. (1991).
Performance on a five-item mental health screening test. Medical Care, 29, 169.
Breslin, S. (1991). Quality of life: how is it measured and defined? Urologia Internationalis, 46, 246-
251.
Bullinger, M. (1994). Ensuring international equivalence of quality of life measures: problems and
approaches to solution. In J. Orley and W. Kuyken (Eds), Quality of Life Assessment: International
Perspectives. Heidelberg: Springer-Verlag.
Fallowfield, L. (1990). The Quality of Life: The Missing Measurement in Health Care. Souvenir
Press.
Gerin, P., Dazord, A., Boissel, J. and Chifflet, R. (1992). Quality of Life assessment in therapeutic
trials: Rationale for and presentation of a more appropriate instrument. Fundamental Clinical
Pharmacology, 6, 263-276.
Hunt, S.M., McKenna, S.P. and McEwan, J. (1989). The Nottingham Health Profile. Users
Manual. Revised edition.
Kuyken, W., Orley, J., Hudelson, P. and Sartorius, N. (1994). Quality of life assessment across
cultures. International Journal of Mental Health, 23 (2), 5-27.
Olweny, C. L. M. (1992). Quality of life in developing countries. Journal of Palliative Care, 8, 25-
30.
Orley, J. and Kuyken, W. (Eds) (1994). Quality of Life Assessment: International Perspectives.
Heidelberg: Springer Verlag.
Patrick D. L. and Erikson, P. (1993) Health Status and Health Policy: Allocating Resources to Health
Care. New York: Oxford University Press.
Sartorius, N. and Helmchen, H. (1981). Aims and implementation of multi-centre studies. Modern
Problems of Pharmacopsychiatry, 16, 1-8.
Sartorius, N. and Kuyken, W. (1994). Translation of health status instruments. In J. Orley and W.
Kuyken (Eds). Quality of Life Assessment: International Perspectives. Heidelberg: Springer Verlag.
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Smart, C.R. and Yates, J. W. (1987). Quality of life. Cancer, 60 , 620-622.
Szabo, S. on behalf of the WHOQOL Group (1996). The World Health Organisation Quality of
Life (WHOQOL) Assessment Instrument. In B. Spilker (Ed.) Quality of Life and
Pharmacoeconomics in Clinical Trials (2nd edition). Lippincott-Raven Publishers, Philadelphia.
The WHOQOL Group. (1994a). Development of the WHOQOL: Rationale and current status.
International Journal of Mental Health, 23 (3), 24-56.
The WHOQOL Group. (1994b). The development of the World Health Organization quality of life
assessment instrument (the WHOQOL). In J. Orley and W. Kuyken (Eds) Quality of Life Assessment:
International Perspectives. Heidelberg: Springer Verlag.
The WHOQOL Group (1995). The World Health Organization Quality of Life assessment
(WHOQOL): Position paper from the World Health Organization. Social Science and Medicine,
41, 1403-1409.
The WHOQOL Group (1997). An approach to response scale development for cross-cultural
questionnaires. European Psychologist, 2, 270-276.
The WHOQOL Group. The World Health Organization Quality of Life Assessment (WHOQOL):
Development and General Psychometric Properties. Social Science & Medicine (in press).
The WHOQOL Group. The World Health Organization WHOQOL-100 : Tests of the Universality
of Quality of Life in Fifteen Different Cultural Groups World-wide. Submitted for publication.
Ware, J. E., Snow, K., K., Kosinski, M. and Gandek, B. (1993). SF-36 Health Survey: Manual and
Interpretation Guide. New England Medical Center, MA, USA.
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World Health Organization. (1991). World Health Statistics Annual. Geneva: WHO.
World Health Organization. (1994). Quality of Life Assessment: An Annotated Bibliography. Geneva:
WHO (WHO/MNH/PSF/94.1).
56
APPENDIX 1 - FACET DEFINITIONS AND RESPONSE SCALES
INTRODUCTION
Each WHOQOL facet can be characterised as a description of a behaviour, a state of being, a capacity
or potential, or a subjective perception or experience. For example, pain is a subjective perception or
experience; fatigue may be defined as a state; mobility may be defined either as a capacity (ability to
move around) or as a behaviour (actual report of walking). A definition was written for each of the
facets of quality of life covered by the WHOQOL assessment.
Unpleasant physical sensations such as stiffness, aches, long-term or short-term pain, or itches are
included. Pain is judged to be present if a person reports it to be so, even if there is no medical reason
to account for it.
The impact of fatigue on social relationships, the increased dependence on others due to chronic
fatigue and the reason for any fatigue are beyond the scope of questioning, although they are implicit to
the questions in this facet and facets concerned specifically with daily activities and interpersonal
relationships.
The facet's focus is on whether sleep is disturbed or not; this can be for any reason, both to do with the
person or to do with the environment.
The questions in this facet do not inquire into specific aspects of sleep such as waking up early in the
morning or whether or not a person takes sleeping pills. The question of whether a person is dependent
on substances (e.g. sleeping pills) to help him/her sleep is covered in a separate facet.
DOMAIN II - PSYCHOLOGICAL
4. Positive feelings
This facet examines how much a person experiences positive feelings of contentment, balance, peace,
happiness, hopefulness, joy and enjoyment of the good things in life. A person's view of, and feelings
about the future are seen as an important part of this facet. For many respondents this facet may be
regarded as synonymous with quality of life. Negative feelings are not included as these are covered
elsewhere.
6. Self-esteem
This facet examines how people feel about themselves. This might range from feeling positive about
themselves to feeling extremely negative about themselves. A person's sense of worth as a person is
explored. The aspect of self esteem concerned with a person's feeling of self-efficacy, satisfaction with
oneself and control is also included in the focus of this facet.
Questions are likely to include people's feelings about themselves in a range of areas: how they are able
to get along with other people; their education; their appraisal of their ability to change or accomplish
particular tasks or behaviours; their family relations; and their sense of dignity and self-acceptance. To
some people self-esteem depends largely on how they function, whether at work, at home or how they
are perceived and treated by others. In some cultures self-esteem is the esteem felt within the family
rather than individual self-esteem. It is assumed that questions will be interpreted by respondents in
ways that are meaningful and relevant to their position in life.
Questions do not include specific references to body image and social relationships as these are
covered in different areas. However, the sense of self-worth that comes from these areas is intended to
be covered by the questions though at a more general level. It is acknowledged that some people may
find self-esteem difficult to talk about, and questions are framed to try take this into account.
How others respond to a person's appearance is likely to affect the person's body image very
considerably. The phrasing of the questions aims to encourage respondents to answer how they really
feel rather than how they feel they should respond. In addition they are phrased so as to be able to
59
include a person who is happy with the way they look as well as someone who is severely physically
handicapped.
8. Negative feelings
This facet concerns how much a person experiences negative feelings, including despondency, guilt,
sadness, tearfulness, despair, nervousness, anxiety and a lack of pleasure in life. The facet includes a
consideration of how distressing any negative feelings are and their impact on the person's day-to-day
functioning. Questions are framed so as to include people with quite disabling psychological
difficulties such as severe depression, mania or panic attacks.
Questions do not include poor concentration, nor the relationship between negative affect and the
person's social relationships because these are covered elsewhere. Nor do questions include any
detailed assessment of the severity of the negative feelings.
The focus is on the person's general ability to go wherever he/she wants to go without the help of
others regardless of the means used to do so. The assumption is made that wherever a person is
dependent to a significant extent for his/her mobility on another person this is likely to affect quality of
life adversely. In addition, questions address people with mobility difficulties regardless of whether
changes in their mobility were sudden or more gradual, although it is acknowledged that this is likely
to affect the impact on quality of life significantly.
A person's impairment does not necessarily affect his/her mobility. So for example someone using a
wheelchair or walking frame may have satisfactory mobility in an adequately adapted home or
workplace. Nor does this facet include transportation services (e.g. car, bus) as this is covered in a
separate facet (Transport).
60
10. Activities of Daily Living
The facet explores a person's ability to perform usual daily living activities. This includes self-care and
caring appropriately for property. The focus is on a person's ability to carry out activities, which he/she
is likely to need to perform on a day-to-day basis. The degree to which people are dependent on others
to help them in their daily activities is also likely to affect their quality of life.
The questions do not include aspects of daily living which are covered in other areas; namely, specific
activities affected by fatigue, sleep disturbances, depression, anxiety, mobility, and so on. Questions
disregard whether a person has a home or a family.
This facet includes medical interventions that are not pharmacological, but on which the person is still
dependent, for example a pacemaker, artificial limb or colostomy bag. The questions do not include
detailed enquiry into the type of medication.
The questions do not include how people feel about the nature of the work that they do, nor do they
include the quality of their work environment.
This facet includes the ability and opportunity to love, to be loved and to be intimate with others both
emotionally and physically. The extent to which people feel they can share moments of both happiness
and distress with loved ones, and a sense of loving and being loved are included. The physical aspects
of intimacy such as hugging and touch are also included. It is acknowledged, however, that this facet
is likely to overlap considerably with the intimacy of sex which is covered in the facet Sexual activity.
The questions include how much satisfaction a person gets from, or has problems managing the
burdens of caring for others. The possibility of this being both a positive as well as a negative
experience is implicit to the facet.
This facet addresses all types of loving relationships, such as close friendships, marriages and both
heterosexual and homosexual partnerships.
This includes how much the person feels he/she receives approval and encouragement from family and
friends. The potentially negative role of family and friends in a person's life is included in this facet
and questions are framed to allow negative effects of family and friends such as verbal and physical
abuse to be recorded.
62
Sexual activity and intimacy are for many people intertwined. Questions, however, enquire only about
sex drive, sexual expression and sexual fulfilment, with other forms of physical intimacy being covered
elsewhere. In some cultures fertility is central to this facet, and child bearing is an extremely valued
role. This facet incorporates this aspect of sex in these cultures, and is likely to be interpreted in these
terms in these cultures. Questions do not include the value judgements surrounding sex, and address
only the relevance of sexual activity to a person's quality of life. Thus the person's sexual orientation
and sexual practices are not seen as important in and of themselves: rather it is the desire for,
expression of, opportunity for and fulfilment from sex that is the focus of this facet.
It is acknowledged that sexual activity is difficult to ask about, and it is likely that responses to these
questions in some cultures may be more guarded. It is further anticipated that people of different ages
and different gender will answer these questions differently. Some respondents may report little or no
desire for sex without this having any adverse effects on their quality of life.
DOMAIN V - ENVIRONMENT
16. Physical safety and security
This facet examines the person's sense of safety and security from physical harm. A threat to safety or
security might arise from any source such as other people or political oppression. As such this facet is
likely to bear directly on the person's sense of freedom. Hence, questions are framed to allow answers
that range from a person having the opportunities to live without constraints, to the person living in a
state or neighbourhood that is oppressive and felt to be unsafe.
Questions include a sense of how much the person thinks that there are 'resources' which protect or
might protect his/her sense of safety and security. This facet is likely to have particular significance for
certain groups, such as victims of disasters, the homeless, people in dangerous professions, relations of
criminals, and victims of abuse.
Questions do not explore in depth the feelings of those who might be seriously mentally ill and
perceive that their safety is threatened by "being persecuted by aliens", for example.
Questions focus on a person's own feeling of safety / lack of safety, security / insecurity in so far as
these affect quality of life.
63
17. Home Environment
This facet examines the principal place where a person lives (and, at a minimum, sleeps and keeps
most of his/her possessions), and the way that this impacts on the person's life. The quality of the
home would be assessed on the basis of being comfortable, as well as affording the person a safe place
to reside.
Other areas which are included implicitly are: crowdedness; the amount of space available; cleanliness;
opportunities for privacy; facilities available (such as electricity, toilet, running water); and the quality
of the construction of the building (such as roof leaking and damp).
The quality of the immediate neighbourhood around the home is important for quality of life, and
questions include reference to the immediate neighbourhood. Questions are phrased so as to include
the usual word for 'home', i.e. where the person usually lives with his/her family. However, questions
are phrased to include people who do not live in one place with their family, such as refugees, or
people living in institutions. It would not usually be possible to phrase questions to allow homeless
people to answer meaningfully.
The questions include a sense of satisfaction / dissatisfaction with those things which the person's
income enables them to obtain. Questions include a sense of the dependence / independence provided
by the person's financial resources (or exchangeable resources), and the feeling of having enough.
Assessment will occur regardless of the respondent's state of health or whether or not the person is
employed. It is acknowledged that a person's perspective on financial resources as "enough", "meeting
my needs" etc. is likely to vary greatly, and the questions are framed to allow this variation to be
accommodated.
64
19. Health and social care: availability and quality
The facet examines the person's view of the health and social care in the near vicinity. "Near" is the
time it takes to get help.
Questions include how the person views the availability of health and social services as well as the
quality and completeness of care that he/she receives or expects to receive should these services be
required. Questions include volunteer community support (religious charities, temples ...) which either
supplements or may be the only available health care system in the person's environment. Questions
include how easy / difficult it is to reach local health and social services and to bring friends and
relatives to these facilities.
The focus is on the person's view of the health and social services. Questions do not ask about aspects
of health care which have little personal meaning or relevance to the person who will be answering the
question.
This facet includes being in touch and having news of what is going on, which for some people is
broad (the "world news") and for others is more limited (village gossip). Nevertheless, a feeling of
being in touch with what is going on around them is important for many people and is included.
The focus is on a person's chances to fulfil a need for information and knowledge whether this refers to
knowledge in an education sense, or to local, national or international news that has some relevance to
the person's quality of life.
Questions are phrased in order to be able to capture these different aspects of acquiring new
information and skills ranging from world news and local gossip to formal educational programs and
vocational training. It is assumed that questions will be interpreted by respondents in ways that are
meaningful and relevant to their position in life.
65
21. Participation in and opportunities for recreation and leisure
This facet explores a person's ability, opportunities and inclination to participate in leisure, pastimes
and relaxation.
The questions include all forms of pastimes, relaxation and recreation. This might range from seeing
friends, to sports, to reading, to watching television or spending time with the family, to doing nothing.
Questions focus on three aspects: the person's capacity for, opportunities for and enjoyment of
recreation and relaxation.
This facet does not include Home environment or Transport as these are covered in separate facets.
23. Transport
This facet examines the person's view of how available or easy it is to find and use transport services to
get around.
Questions include any mode of transport that might be available to the person (bicycle, car, bus ...).
The focus is on how the available transport allows the person to perform the necessary tasks of daily
life as well as the freedom to perform chosen activities.
Questions do not enquire into the type of transport, nor do they explore means that are used to get
around in the home itself. In addition the personal mobility of the individual is not included because
this is covered elsewhere (Mobility).
66
DOMAIN VI - SPIRITUALITY / RELIGION / PERSONAL BELIEFS
24. Spirituality / religion / personal beliefs
This facet examines the person's personal beliefs and how these affect quality of life. This might be by
helping the person cope with difficulties in his/her life, giving structure to experience, ascribing
meaning to spiritual and personal questions, and more generally providing the person with a sense of
well-being. This facet addresses people with differing religious beliefs (e.g. Buddhists, Christians,
Hindus, Muslims), as well as people with personal and spiritual beliefs that do not fit within a
particular religious orientation.
For many people religion, personal beliefs and spirituality are a source of comfort, well-being, security,
meaning, sense of belonging, purpose and strength. However, some people feel that religion has a
negative influence on their life. Questions are framed to allow this aspect of the facet to emerge.
Response scales
The questions, which make up the WHOQOL-100 arose from a process designed to capture both the
culture-specific interpretation of quality of life facets as well as language idiom. There was therefore,
of necessity, some diversity in the nature and structure of the questions. Consequently, there was a
trade-off between a minimum number of standardised question-response scale formats whilst still
allowing an enquiry into difficult aspects of quality of life, and maintaining the unique face validity of
the questions in the WHOQOL-100 in different cultures. To accommodate this there are four five-
point response scales concerned with the intensity, capacity, frequency and evaluation of states or
behaviours.
The Intensity response scale refers to the degree or extent to which a person experiences a state or
situation e.g. the intensity of pain. Questions may also refer to the vigour or strength of a behaviour.
The assumption is that the experience of a more intense state is associated with corresponding changes
in quality of life. Example questions include: "Do you worry about any pain or discomfort?" and "Do
you have any difficulties with sleeping?". One response scale is used to assess intensity. In English,
the anchors on the scale are "Not at all" and "Extremely" or "An extreme amount".
The Capacity response scale refers to a capacity for a feeling, state or behaviour. The assumption is
that a more complete capacity is associated with corresponding changes in quality of life. Example
questions include: "Do you have enough energy for everyday life?" and "To what extent are you able
to carry out your daily activities?". In English, the anchor points are "Not at all" and "Completely".
67
The Frequency response scale pairings refer to the number, frequency, commonness, or rate of a state
or behaviour. The time frame is crucial to these questions, such that the frequency refers to its
frequency in the specified time period. The assumption is that a greater number of occurrences of the
state or behaviour is associated with corresponding changes in quality of life. Example questions are:
"How often do you have negative feelings, such as blue mood, despair, anxiety, depression?" and
"How often do you suffer (physical) pain?". In English, the anchor points are "Never" and "Always".
The Evaluation response scale refers to the appraisal of a state, capacity or behaviour. The
assumption is that a more positive evaluation is associated with a corresponding increase in the
respondent's quality of life. Example questions are: "How satisfied are you with your capacity for
work?" and "How satisfied are you with your personal relationships?". Several evaluation scales are
employed. In English, the anchor points are "Very happy" - "Very unhappy"; "Very satisfied" - "Very
dissatisfied"; and "Very good" - "Very poor". This response scale differs from the intensity, frequency
and capacity response scales in that it has a neutral midpoint and the anchor points are not extreme
points, to maximise full usage of the scale. In several languages (e.g. Croatian and Dutch) the
distinction between the two question stems "How satisfied...?" and "How happy ... ?" does not translate
and all of these questions and response scales therefore become "How satisfied... ?".
Response scales have been derived for each of the WHOQOL-100's language versions according to a
standardised methodology. Ensuring equivalence in response scales required a methodology that goes
beyond translation of standardised English language scale descriptors. Although endpoints such as
"Never" and "Always" are universal, shades of meaning between endpoints (e.g. "sometimes") are
more ambiguous, difficult to translate, and subject to cultural variation in their interpretation. To
ensure equivalence across WHOQOL field centres, a methodology was used which specified the
anchor points for each of the four types of 5-point response scales (Evaluation, Intensity, Capacity and
Frequency), and a scale metric which intermediate descriptors should fit. That is, descriptors for each
of the response scales were derived to find words/terms falling at 25%, 50% and 75% points between
the two anchors.
This methodology ensured first that response scales were not simply translated from a source language
with all the problems associated with this process. Second, it secured a high degree of scalar
equivalence between languages, which was supported by subsequent bilingual review. Third, it
68
ensured equidistance between descriptors on the scales. The method whereby response scales were
derived is described more fully elsewhere (Szabo, S., Orley,J. and Saxena, S. On behalf of the
WHOQOL Group, 1997).
69
APPENDIX 2 - CRITERIA FOR GENERATING AND SELECTING WHOQOL
ITEMS
Questions should:
1. Be based as far as possible on the suggestions of patients and health personnel participating
in the focus groups
2. Give rise to answers that are illuminating about the respondents' quality of life, as defined in
this project
4. Cover, in combination with other questions for a given facet, the key aspects of that facet as
described in the facet definition
10. Avoid any explicit reference point either in terms of time or in terms of some comparison
point (e.g. the ideal or before I was ill)
11. Be applicable to individuals with a range of impairment (from very little to a lot)
70
APPENDIX 3 - NUMBER OF QUESTIONS SELECTED FOR PILOT WHOQOL
(236 QUESTIONS) AND FIELD TRIAL WHOQOL (100 QUESTIONS) FROM
EACH OF THE MAIN STUDY FIELD CENTRES
Bath, UK 31 (13%) 13
Panama 48 (20%) 23
71
APPENDIX 4 – THE WHOQOL-100
Instructions
This questionnaire asks how you feel about your quality of life, health, and other areas of your life.
Please answer all the questions. If you are unsure about which response to give to a question,
please choose the one that appears most appropriate. This can often be your first response.
Please keep in mind your standards, hopes, pleasures and concerns. We ask that you think about
your life in the last two weeks.
For example, thinking about the last two weeks, a question might ask:
How much do you worry about your health?
You should circle the number that best fits how much you have worried about your health over the
last two weeks. So you would circle the number 4 if you worried about your health “Very much”,
or circle number 1 if you have worried “Not at all” about your health. Please read each question,
assess your feelings, and circle the number on the scale for each question that gives the best answer
for you.
72
The following questions ask about how much you have experienced certain things in the last two
weeks, for example, positive feelings such as happiness or contentment. If you have experienced
these things an extreme amount circle the number next to “An extreme amount”. If you have not
experienced these things at all, circle the number next to “Not at all”. You should circle one of the
numbers in between if you wish to indicate your answer lies somewhere between “Not at all” and
“Extremely”. Questions refer to the last two weeks.
F1.4 To what extent do you feel that (physical) pain prevents you from doing what you need to
do?
Not at all A little A moderate Very much An extreme
1 2 amount 4 amount
3 5
73
F4.3 How positive do you feel about the future?
Not at all Slightly Moderately Very Extremely
1 2 3 4 5
F7.3 Is there any part of your appearance which makes you feel uncomfortable?
Not at all A little A moderate Very much An extreme
1 2 amount 4 amount
3 5
F8.3 How much do any feelings of sadness or depression interfere with your everyday
functioning?
Not at all A little A moderate Very much An extreme
1 2 amount 4 amount
3 5
74
F8.4 How much do any feelings of depression bother you?
Not at all A little A moderate Very much An extreme
1 2 amount 4 amount
3 5
F10.2
F15.2 How well are your sexual needs fulfilled?
Not at all Slightly Moderately Very Extremely
1 2 3 4 5
F15.4 Are you bothered by any difficulties in your sex life? To what extent do you have
difficulty in performing your routine activities?
Not at all A little A moderate Very much An extreme
1 2 amount 4 amount
3 5
F10.4 How much are you bothered by any limitations in performing everyday living activities?
Not at all A little A moderate Very much An extreme
1 2 amount 4 amount
3 5
F11.2 How much do you need any medication to function in your daily life?
Not at all A little A moderate Very much An extreme
1 2 amount 4 amount
3 5
F11.3 How much do you need any medical treatment to function in your daily life?
Not at all A little A moderate Very much An extreme
1 2 amount 4 amount
3 5
F11.4 To what extent does your quality of life depend on the use of medical substances or medical
aids?
Not at all Slightly Moderately Very Extremely
1 2 3 4 5
F13.1 How alone do you feel in your life?
Not at all Slightly Moderately Very Extremely
1 2 3 4 5
F15.2 How well are your sexual needs fulfilled?
Not at all Slightly Moderately Very Extremely
1 2 3 4 5
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F16.1 How safe do you feel in your daily life?
Not at all Slightly Moderately Very Extremely
1 2 3 4 5
F16.2 Do you feel you are living in a safe and secure environment?
Not at all Slightly Moderately Very Extremely
1 2 3 4 5
F16.3 How much do you worry about your safety and security?
Not at all Slightly Moderately Very Extremely
1 2 3 4 5
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F23.2 To what extent do you have problems with transport?
Not at all A little A moderate Very much An extreme
1 2 amount 4 amount
3 5
F23.4 How much do difficulties with transport restrict your life?
Not at all A little A moderate Very much An extreme
1 2 amount 4 amount
3 5
The following questions ask about how completely you experience or were able to do
certain things in the last two weeks, for example activities of daily living such as washing,
dressing or eating. If you have been able to do these things completely, circle the number
next to “Completely”. If you have not been able to do these things at all, circle the number
next to “Not at all”. You should circle one of the numbers in between if you wish to indicate
your answer lies somewhere between “Not at all” and “Completely”. Questions refer to the
last two weeks.
77
F2.1 Do you have enough energy for everyday life?
Not at all A little Moderately Mostly Completely
1 2 3 4 5
F10.1 To what extent are you able to carry out your daily activities?
Not at all A little Moderately Mostly Completely
1 2 3 4 5
F14.1 Do you get the kind of support from others that you need?
Not at all A little Moderately Mostly Completely
1 2 3 4 5
F14.2 To what extent can you count on your friends when you need them?
Not at all A little Moderately Mostly Completely
1 2 3 4 5
F17.2 To what degree does the quality of your home meet your needs?
Not at all A little Moderately Mostly Completely
1 2 3 4 5
F18.1 Have you enough money to meet your needs?
Not at all A little Moderately Mostly Completely
1 2 3 4 5
F20.1How available to you is the information that you need in your day-to-day life?
Not at all A little Moderately Mostly Completely
1 2 3 4 5
F20.2To what extent do you have opportunities for acquiring the information that you feel
you need?
Not at all A little Moderately Mostly Completely
1 2 3 4 5
F21.1 To what extent do you have the opportunity for leisure activities?
Not at all A little Moderately Mostly Completely
1 2 3 4 5
78
F21.2 How much are you able to relax and enjoy yourself?
Not at all A little Moderately Mostly Completely
1 2 3 4 5
F23.1 To what extent do you have adequate means of transport?
Not at all A little Moderately Mostly Completely
1 2 3 4 5
The following questions ask you to say how satisfied, happy or good you have felt about
various aspects of your life over the last two weeks . For example, about your family life or
the energy that you have. Decide how satisfied or dissatisfied you are with each aspect of
your life and circle the number that best fits how you feel about this. Questions refer to the
last two weeks.
F2.3 How satisfied are you with the energy that you have?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F5.2 How satisfied are you with your ability to learn new information?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
79
F5.4 How satisfied are you with your ability to make decisions?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F7.4 How satisfied are you with the way your body looks?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F10.3How satisfied are you with your ability to perform your daily living activities?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F13.3 How satisfied are you with your personal relationships?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F14.4 How satisfied are you with the support you get from your friends?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F13.4 How satisfied are you with your ability to provide for or support others?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
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3
F16.4 How satisfied are you with your physical safety and security?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F17.3 How satisfied are you with the conditions of your living place?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F18.3 How satisfied are you with your financial situation?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F19.3 How satisfied are you with your access to health services?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F19.4 How satisfied are you with the social care services?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F20.3 How satisfied are you with your opportunities for acquiring new skills?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F20.4 How satisfied are you with your opportunities to learn new information?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F21.4 How satisfied are you with the way you spend your spare time?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F22.3 How satisfied are you with your physical environment (e.g. pollution, climate, noise,
attractiveness)?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F22.4 How satisfied are you with the climate of the place where you live?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
81
F23.3 How satisfied are you with your transport?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F13.2 Do you feel happy about your relationship with your family members?
Very unhappy Unhappy Neither happy Happy Very happy
1 2 nor unhappy 4 5
3
The following questions refer to how often you have felt or experienced certain things, for
example the support of your family or friends or negative experiences such as feeling
unsafe. If you have not experienced these things at all in the last two weeks, circle the
number next to the response “never”. If you have experienced these things, decide how
often and circle the appropriate number. So for example if you have experienced pain all
the time in the last two weeks circle the number next to “Always”. Questions refer to the
last two weeks.
82
Never Seldom Quite often Very often Always
1 2 3 4 5
F8.1 How often do you have negative feelings, such as blue mood, despair, anxiety,
depression?
Never Seldom Quite often Very often Always
1 2 3 4 5
The following questions refer to any “work” that you do. Work here means any major
activity that you do. This includes voluntary work, studying full-time, taking care of the
home, taking care of children, paid work or unpaid work. So work, as it is used here,
means the activities you feel take up a major part of your time and energy. Questions
refer to the last two weeks.
F12.1 Are you able to work?
Not at all A little Moderately Mostly Completely
1 2 3 4 5
F12.2 Do you feel able to carry out your duties?
Not at all A little Moderately Mostly Completely
1 2 3 4 5
F12.4 How satisfied are you with your capacity for work?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
F12.3 How would you rate your ability to work?
Very poor Poor Neither poor nor Good Very good
1 2 good 4 5
3
83
The next few questions ask about how well you were able to move around in the last two
weeks. This refers to your physical ability to move your body in such a way as to allow
you to move about and do the things you would like to do, as well as the things that you
need to do. Once again these questions refer to the last two weeks.
F9.4 To what extent do any difficulties in movement affect your way of life?
Not at all A little A moderate Very much An extreme
1 2 amount 4 amount
3 5
F9.2 How satisfied are you with your ability to move around?
Very dissatisfied Dissatisfied Neither satisfied Satisfied Very satisfied
1 2 nor dissatisfied 4 5
3
The following few questions are concerned with your personal beliefs, and how these affect your
quality of life. These questions refer to religion, spirituality and any other beliefs you may hold.
Once again these questions refer to the last two weeks.
84
F24.4To what extent do your personal beliefs help you to understand difficulties in life?
Not at all A little A moderate Very much An extreme
1 2 amount 4 amount
3 5
85
ABOUT YOU
86
APPENDIX 5 - CORRESPONDENCE ADDRESSES FOR FIELD CENTRES
Australia Prof. H. Herrman, Department of Psychiatry, St. Vincent's Hospital, 41 Victoria Parade, Fitzroy, Vic.
3065, Australia Tel:..613 9288 4751 Fax:..613 9288 4802 e-mail: herrmahe@svhm.org.au
Brazil Dr M. Fleck, University of the State of Rio Grande do Sul, Dept. of Psychiatry and Legal Medicine, Rua
Ramiro Barcelos 2350, Sala 177C - HCPA, CEP 90035-003 Bairro Rio Branco, Porto Alegre, Brazil
Tel: ..5551 330 5655 Fax: ..5551 330 8965 e-mail: mfleck@voyager.com.br
Bulgaria Dr N. Butorin, National Centre for Interdisciplinary Human Studies, 15 Dim. Nestorov Str., 1431 Sofia,
Bulgaria Tel:..35 92 59 80 39 Fax:..359 259 11 19 e-mail: mental@mbox.cit.bg or
upetkov@medun.acad.bg
Canada Dr A. E. Molzahn, Faculty of Human and Social Development, University of Victoria, POB 1700, Victoria
BC, Canada V8W 2Y2
Tel: ..1 250 721 8050 Fax: ..1 250 721 7067 e-mail: amolzahn@hsd.uvic.ca
Canada Dr G. Page, School of Nursing, University of Quebec at Rimouski, 300 Avenue des Ursulines
Rimouski PQ, Canada G5L 3A1 Tel: ..1418 724 1628 Fax: ..1418 724 1525
China Prof. J. Fang, Dept. of Medical Statistics and Community Medicine, School of Public Health, Sun Yat-
Sen University of Medical Sciences, 510089 Guang Zhou, People’s Republic of China Fax: ..8620
8776 5679
China Dr G. Yongping, Hebei Mental Health Center, 10 Weisheng Road, Boading City, Hebei Province
071000, People’s Republic of China Tel: ..20 22 688
Croatia Prof. Z. Metelko, Prof. S. Szabo, Mrs M. Pibernik-Okanovic, Vuk Vrhovac Institute, University Clinic for
Diabetes, Endocrinology and Metabolic Diseases, Medical Faculty, University of Zagreb, Dugi Dol 4A,
10000 Zagreb, Croatia Tel:..385 1233 2222 Fax:..385 1233 1515
Private address for correspondence with Prof. S. Szabo: Svacicev trg 13, 41000 Zagreb, Croatia
Czech Dr C. Skoda, Prague Psychiatric Center. Ustavni 91, 181 93 Praha 8 - Bohnice, Czech Republic
Republic Tel:..4202 855 9483 Fax:..4202 855 9805 e-mail: pcpsoc@beba.cesnet.cz
Denmark Professor P. Bech, Psychiatric Research Unit, Fredriksborg General Hospital, DK-3400 Hillerod, Denmark
Tel:..4548 293 252 Fax:..4542 263 877 e-mail: slej@login.dknet.dk
Estonia Professor M. Teichmann, Tallinn Technical University, Ehitajate tee 5, EE-0026 Talllinn, Estonia
Tel:..3722 532 218 Fax:..3722 532 446 e-mail: jyrijr@edu.ttu.ee
France Dr N. Quemada, Centre collaborateur de l'OMS, INSERM Centre Paul Broca, 2ter rue d'Alésia, F -
75014 Paris, France Tel:..33 1 40 78 92 55 Fax:..33 1 45 80 72 93
Dr A. Leplège, INSERM U 292, Hôpital de Bicêtre, F-94275 Le Kremlin BicêtreCdx, France Tel:.. 014 959
1978/014 878 0445 Fax:.. 014 521 2075 e-mail: Alain.Leplege@wanadoo.fr
Germany Prof. M.C. Angermeyer & Dr R. Killian, Universtitätsklinikum Klinik und Poliklinik fur Psychiatrie, Johanisallee 20,
D-04317 Leipzig, Germany Tel: ..49 171 508 9449 Fax: ..49 341 972 4509 e-mail:
schb@server3.medizin.uni-leipzig.de
Hong Mr L. Kwok-fai, Hong Kong Project Team on Chinese Version WHOQOL, Hong Kong Hospital Authority,
Kong c/o Dept. of Occupational Therapy, Queen Elizabeth Hospital, 30 Gascoigne Road, Kowloon, Hong
Kong
Tel: ..852 2958 6166 or 6077 Fax: ..852 2958 6719 e-mail: kflueng@ha.org.hk
88
Country Correspondence address
India Dr S. Kumar, Clinical Epidemiology Unit, Physiology Block (Level 1), Chennai Medical College,
Chennai 600 003, India Tel: ..9144 561 550 Fax: ..9144 580 153 e-mail: gems%vsnl@mcimail.com
India Dr S. Saxena, Department of Psychiatry, All India Institute of Medical Sciences, Ansari Nagar, New
Delhi 110029, India Tel:..91 11 686 4851 Fax:..91 11 686 2663 e-mail: saxenas@medinst.ernet.in
Israel Dr M. Amir, Department of Behavioral Sciences, The Cukier Goldstein-Goren Building, Ben-Gurion
University of the Negev, P.O.B. 653, 84105 Beer-Sheva, Israel Tel:..972 7647 2085 Fax:..972 7647
2932 e-mail: mamir@bgumail.bgu.ac.il
Italy Dr G. de Girolamo, Department of Mental Health, Azienda USL Citte di Bologna, Viale Pepoli 5, I-
40123 Bologna, Italy Tel:..3951 649 1166 Fax:..3951 649 2322 e-mail:
nof2637@iperbole.bologna.it
Japan Dr M. Tazaki, Science University of Tokyo, Kagurzaka 1-3, Shinjuku-ku, Tokyo, Japan
Tel:..81 3 3260 4271 Fax:..81 3 3260 0322 e-mail: Tazaki@rs.kagu.sut.ac.jp
Korea Dr S. Kil Min, Department of Psychiatry, Yonsei University College of Medicine, GPO Box 8044, Seoul,
Korea Fax:..0082 2313 0891
Malaysia Dr H. Che Ismail, Department of Psychiatry, Universiti of Sains Malaysia, Kubang Kerian, Kelantan,
Malaysia Fax:..09765 3370
Norway Dr M. Kalfoss, Department of Public Health and Primary Health Care, Division of Nursing Science,
University of Bergen, Ulriksdal 8c, N-5009 Bergen, Norway Tel:..4755 586 162 Fax:..4755 586 130 e-
mail: mary.kalfoss@isf.uib.no
Pakistan Dr M.H. Mubbashar, Department of Psychiatry, Rawalpindi General Hospital, Rawalpindi, Pakistan
Tel:..9251 844 030 Fax:..9251 411 165
Panama Prof. J. A. Sucre, Apartado 6651, Panama 5, Panama Tel:..507 261 0222 Fax:..507 226 4477 e-
mail: jarroyo@pty.com
Poland Prof. L. Wolowicka, Karol Marcinowski Universit of Medical Sciences, Faculty of Nursing and Health
Sciences, A. Wrosek Collegium, 79 Dabrowskiego str. 60, 60-529 Poznan, Poland Fax:..4861 477 490
Slovakia Dr D. Kovac, Institute of Experimental Psychology, Slovak Academy of Sciences, Dubravska Cesta 9,
81364 Bratislava, Slovakia Tel:..4273 783 417 Fax:..427 375584 e-mail: expspro@savba.savba.sk
South Dr K. Ensink, Department of Psychiatry, University of Cape Town, Groote Schuur Hospital, Observatory
Africa 7925, South Africa Tel:..27 21 475 450 Fax:..27 21 406 6499 e-mail: KE@ray.uct.ac.za
Spain Dr R. Lucas Carrasco, Arm0nia 5, 2-3 08035 Barcelona, Spain Tel: ..343 428 2297 Fax: ..343 428
2559 e-mail: tanguera@psi.ub.es
Sweden Professor I. Wiklund, Health Economics and Quality of Life, Astra Hässle AB, S-431 83 Molndal, Sweden
Tel:..4631 776 1097 Fax:..4631 776 3805
Thailand Mr K. Meesapya, Bureau of Mental Health Technical Development, Department of Mental Health,
Ministry of Public Health, Tivanon Rd., Nonthaburi 11000, Thailand Tel:..662 951 1300 ext.8205
Fax:..662 951 1384 or 662 951 1386 e-mail: kitikorn@health.moph.go.th
The Prof. G. Van Heck & Dr J. De Vries, Department of Psychology, Tilburg University, P.O. Box 90153, NL-
Netherland 5000 LE Tilburg, The Netherlands Tel:..3113 466 2522 Fax:..3113 466 2370 e-mail:
s G.L.vanHeck@kub.nl
89
Country Correspondence address
Turkey Dr C. Fidaner, Mithatpasa cad. 259/10, 35400 Balçova/Izmir, Turkey
Tel:..9023 2425 2463 Fax:..9023 2484 3947 e-mail: Eser@tipfak.ege.edu.tr
UK Dr S. Skevington, University of Bath, School of Social Sciences, Claverton Down, Bath BA2 7AY, United
Kingdom Tel:..4412 2582 6830 Fax:..4412 2582 6381 e-mail: S.M.Skevington@bath.ac.uk
USA Prof. D. Patrick, Department of Health Services H689, University of Washington, Box 357660, Seattle
Washington 98195-7660, USA Tel:..1206 616 2981 Fax:..1206 543 3964 e-mail:
donald@u.washington.edu
Zambia Dr A. Haworth, Department of Psychiatry, School of Medicine, University of Zambia, POB 30043,
Lusaka, Zambia Tel:..2601 290 395 Fax:..2601 253 952 e-mail: haworth@zamet.zm
Zimbabw Prof. W. Acuda & Dr J. Mutambirwa, Department of Psychiatry, University of Zimbabwe, P.O. Box A
e 178, Avondale, Harare, Zimbabwe Tel:..2634 791 631 Fax:..2634 333 407 or 724 912
90
APPENDIX 6 - FOCUS GROUP INTERVIEW SCHEDULE
WELCOME
The moments before the focus group begins provide an excellent opportunity for participants to get to
know one another a little, for the moderator(s) to hand out name badges (wherever appropriate), and
for the moderators to try to identify individuals who are prone to be quiet and those prone to dominate
a discussion.
WARM-UP
In some settings a warm up exercise may familiarise participants with what is expected of them and
facilitate subsequent discussion. One possible exercise might be for respondents to free-list areas of
their life which have contributed to their quality of life in a positive way over the previous two weeks.
1. What is a focus group? A type of "group interview" to generate ideas about an issue.
3. Very brief outline of WHOQOL project and the place of focus groups within it. The WHO
definition of quality of life should be described in lay terms.
4. What is the purpose of this particular focus group? To check on the validity and
comprehensiveness of the domain and facet structure in the target culture; to evaluate the
comprehensiveness of the existing core items represented in the WHOQOL; and to generate
any additional items that may be necessary.
5. The focus group is "time out" from normal cultural and social rules about what is and what is
not acceptable to discuss.
6. There are no right and wrong answers, merely differing points of view. For the purpose of the
focus group all participants' ideas and views are equally valuable.
91
7. Participants should try to say as honestly as they can what they think rather than what they
think they should or are expected to say.
9. Time the session is expected to take, and whether or not there will be any breaks for
refreshments etc.
Wherever possible participants should have read through the facet definitions and core questions
before the focus group session. If this is not possible, time will need to be made during the focus
group for participants to read carefully through each of the facets, and questions for each facet. In
certain circumstances it may be necessary for the moderator and/or assistant moderator to assist the
person with reading through the facet definitions.
It is suggested that an overhead, or flip chart with a facet definition and core questions on each page
should be used in this part of the focus group. The moderator may wish to discuss facets in a
certain order, or randomise the order in which facets are discussed. In any case it will save a great
deal of time if related facets are discussed together: e.g. those concerned with social relationships,
those concerned with work ...
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APPENDIX 7 - WHOQOL-100 IMPORTANCE QUESTIONS
The following questions ask about how important various aspects of your life are to you. We ask that
you think about how much these affect your quality of life. For example one question asks about how
important sleep is to you. If sleep is not important to you, circle the number next to "not important". If
sleep is "very important" to you, but not "extremely important", you should circle the number next to
"Very important". Unlike earlier questions, these questions do not refer only to the last two weeks.
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
94
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
95
Imp4.3 How important to you is it to feel hopeful?
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Imp5.1 How important to you is being able to learn and remember important information?
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Imp5.2 How important to you is being able to think through everyday problems and make
decisions?
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Imp8.1 How important to you is it to be free of negative feelings (sadness, depression, anxiety,
worry...)?
Moderately
Not important A little important important Very important Extremely
96
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Imp10.1 How important to you is being able to take care of your daily living activities (e.g.
washing, dressing, eating)?
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
97
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Imp19.1 How important to you is being able to get adequate health care?
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Imp19.2 How important to you is being able to get adequate social help?
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Imp20.1 How important to you are chances for getting new information or knowledge?
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
98
Imp20.2 How important to you are chances to learn new skills?
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Imp22.1 How important to you is your environment (e.g. pollution, climate, noise,
attractiveness)?
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
Moderately
Not important A little important important Very important Extremely
1 2 3 4 important
5
99
APPENDIX 8- THE WHOQOL-BREF
Instructions
This assessment asks how you feel about your quality of life, health, or other areas of your life. Please answer all the
questions. If you are unsure about which response to give to a question, please choose the one that appears most
appropriate. This can often be your first response.
Please keep in mind your standards, hopes, pleasures and concerns. We ask that you think about your life in the last
two weeks. For example, thinking about the last two weeks, a question might ask:
You should circle the number that best fits how much support you got from others over the last two weeks. So you
would circle the number 4 if you got a great deal of support from others as follows.
100
You would circle number 1 if you did not get any of the support that you needed from others in the last two weeks.
Please read each question, assess your feelings, and circle the number on the scale for each question that gives the best
answer for you.
THE WHOQOL-BREF
The following questions ask about how much you have experienced certain things in the last two weeks.
The following questions ask about how completely you experience or were able to do certain things in the last two
weeks.
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(F18.1) needs?
13 How available to you is the information that 1 2 3 4 5
(F20.1) you need in your day-to-day life?
14 To what extent do you have the opportunity 1 2 3 4 5
(F21.1) for leisure activities?
The following questions ask you to say how good or satisfied you have felt about various aspects of your life over the
last two weeks.
The following question refers to how often you have felt or experienced certain things in the last two weeks.
102
Do you have any comments about the assessment?
................................................................................................................................................................................................
...
................................................................................................................................................................................................
...
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APPENDIX 9 - STEPS FOR CHECKING AND CLEANING DATA AND COMPUTING DOMAIN SCORES
FOR THE WHOQOL-100
Steps SPSS syntax for carrying out data checking, cleaning and computing total
scores
RECODE f11 f12 f13 f14 f21 f22 f23 f24 f31 f32 f33 f34 f41 f42 f43 f44
Check all 100 items from assessment f51 f52 f53 f54 f61 f62 f63 f64 f71 f72 f73 f74 f81 f82 f83 f84 f91 f92 f93 f94
have a range of 1-5 f101 f102 f103 f104 f111 f112 f113 f114 f121 f122 f123 f124
f131 f132 f133 f134 f141 f142 f143 f144 f151 f152 f153 f154 f161 f162 f163
f164 f171 f172 f173 f174 f181 f182 f183 f184 f191 f192 f193 f194 f201 f202
f203 f204 f211 f212 f213 f214 f221 f222 f223 f224 f231 f232 f233 f234 f241
f242 f243 f244 g1 g12 g2 g3 g4
(1=1) (2=2) (3=3) (4=4) (5=5) (ELSE=SYSMIS).
(This recodes all data outside the range 1-5 to system missing).
Reverse negatively phrased items RECODE f22 f24 f32 f34 f72 f73 f93 f94 f102 f104 f131 f154 f163 f182 f184
f222 f232 f234 (1=5) (2=4) (3=3) (4=2) (5=1).
(These equations calculate the facet and domain scores. All facet scores are
multiplied by 4 so as to provide total scores while permitting up to one item per
facet to be missing. The ‘.6’ in ‘mean.6’ specifies that at least 6 items must be
endorsed or not missing for the score to be calculated).
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Steps SPSS syntax for carrying out data checking, cleaning and computing total
scores
Transform scores to a 0-100 scale COMPUTE pain =(pain-4)*(100/16).
COMPUTE energy=(energy-4)*(100/16).
COMPUTE sleep=(sleep-4)*(100/16).
COMPUTE pfeel=(pfeel-4)*(100/16).
COMPUTE think=(think-4)*(100/16).
COMPUTE esteem=(esteem-4)*(100/16).
COMPUTE body=(body-4)*(100/16).
COMPUTE neg=(neg-4)*(100/16).
COMPUTE mobil=(mobil-4)*(100/16).
COMPUTE activ=(activ-4)*(100/16).
COMPUTE medic=(medic-4)*(100/16).
COMPUTE work=(work-4)*(100/16).
COMPUTE relat=(relat-4)*(100/16).
COMPUTE supp=(supp-4)*(100/16).
COMPUTE sexx=(sexx-4)*(100/16).
COMPUTE safety=(safety-4)*(100/16).
COMPUTE home=(home-4)*(100/16).
COMPUTE finan=(finan-4)*(100/16).
COMPUTE servic=(servic-4)*(100/16).
COMPUTE inform=(inform-4)*(100/16).
COMPUTE leisur=(leisur-4)*(100/16).
COMPUTE envir=(envir-4)*(100/16).
COMPUTE transp=(transp-4)*(100/16).
COMPUTE spirit=(spirit-4)*(100/16).
COMPUTE overll=(overll-4)*(100/16).
COMPUTE PHYS=(dom1-4)*(100/16).
COMPUTE PSYCH=(dom2-4)*(100/16).
COMPUTE IND=(dom3-4)*(100/16)
COMPUTE SOCIAL=(dom4-4)*(100/16).
COMPUTE ENVIR=(dom5-4)*(100/16).
COMPUTE SPIR=(dom6-4)*(100/16).
Delete cases with >20% missing data COUNT TOTAL=F12 TO F244 (1 THRU 5).
FILTER OFF.
(This command creates a new column ‘total’. ‘Total’ contains a count of the
WHOQOL-100 items with the values 1-5 that have been endorsed by each
subject. The ‘F12 TO F244 means that consecutive columns from ‘F12’, the first
item, to ‘F244’, the last item, are included in the count. It therefore assumes that
data is entered in the order given in the assessment and that the “decimal point” is
dropped from the item name.)
SELECT IF (TOTAL>=80).
EXECUTE.
(This second command selects only those cases where ‘total’, the total number of
items completed, is greater than or equal to 80%. It deletes the remaining cases
from the dataset.)
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APPENDIX 10 - STEPS FOR CHECKING AND CLEANING DATA AND COMPUTING DOMAIN SCORES
FOR THE WHOQOL-BREF
SPSS syntax for carrying out data checking, cleaning and computing total
Steps scores
Check all 26 items from assessment RECODE Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9 Q10 Q11 Q12 Q13 Q14 Q15 Q16
have a range of 1-5 Q17 Q81 Q19 Q20 Q21 Q22 Q23 Q24 Q25 Q26
(This recodes all data outside the range 1-5 to system missing.)
Reverse 3 negatively phrased items RECODE Q3 Q4 Q26 (1=5) (2=4) (3=3) (4=2) (5=1).
COMPUTE PSYCH=MEAN.5(Q5,Q6,Q7,Q11,Q19,Q26)*4.
COMPUTE SOCIAL=MEAN.2(Q20,Q21,Q22)*4.
COMPUTE ENVIR=MEAN.6(Q8,Q9,Q12,Q13,Q14,Q23,Q24,Q25)*4.
(These equations calculate the domain scores. All scores are multiplied by 4 so as
to be directly comparable with scores derived from the WHOQOL-100. The ‘.6’
in ‘mean.6’ specifies that 6 items must be endorsed for the domain score to be
calculated.)
Delete cases with >20% missing data COUNT TOTAL=Q1 TO Q26 (1 THRU 5).
(This command creates a new column ‘total’. ‘Total’ contains a count of the
WHOQOL-BREF items with the values 1-5 that have been endorsed by each
subject. The ‘Q1 TO Q26’ means that consecutive columns from ‘Q1’, the first
item, to ‘Q26’, the last item, are included in the count. It therefore assumes that
data is entered in the order given in the assessment.)
SELECT IF (TOTAL>=21).
EXECUTE.
(This second command selects only those cases where ‘total’, the total number of
items completed, is greater than or equal to 80%. It deletes the remaining cases
from the dataset.)
106