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~ Per gamon 0277-9536 95)00112-3 Soc Sci Med Vol. 41, No. 10, pp. 1403 1409, 1995 Copyright © 1995 Elsevier Science Lid Printed in Great Britain. All rights reserved 0277-9536/95 9.50 + 0.00 THE WORLD HEALTH ORGANIZATION QUALITY OF LIFE ASSESSMENT WHOQOL): POSITION PAPER FROM THE WORLD HEALTH ORGANIZATION THE WHOQOL GROUP* A~tract--This paper describes the World Health Organization's project to develop a quality of life instrument (the WHOQOL). It outlines the reasons that the project was undertaken, the thinking that underlies the project, the method that has been followed in its development and the current status of the project. The WHOQOL assesses individuals' perception 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 has been developed collaboratively in several culturally diverse centres over four years. Piloting of the WHO QO L on some 4500 respondents in 15 cultural settings has been completed. On the basis of this data the revised WHOQOL Field Trial Form has been finalized, and field testing is currently in progress. The WHO QO L produces a multi-dimensional profile of scores across six domains and 24 sub-domains of quality of life. Key word~uality of life assessment RATIONALE FOR THE DEVELOPMENT OF THE WHOQOL The World Health Organization (WHO) initiated its project to develop an international quality of life assessment for several reasons. The importance of including a consideration of patients' quality of life in treatment decisions, approval of new pharmaceuti- cals and policy research (program me evaluation and resource allocation' is immediately apparent and has been extensively documented elsewhere (see Ref. [1]). Not so obvious are the benefits of considering quality of life from a cross-cultural perspective. Having an international quality of life assessment such as the WHOQOL makes it possible to carry out quality of life research collaboratively in different cultural settings, and to compare directly results obtained in these different settings. In basic research into quality of life, important new questions can be *This paper was written by Dr Willem Kuyken on behalf of the WHOQOL Group. The WHOQOL group comprises a coordinating group, collaborating investigators in each of the field centres and a panel of consultants. Dr J. Orley directs the project. He has been assisted by Dr W. Kuyken, D r N. Sartorius and D r M. Power. In the field centres collaborating investigators are: Professor H. Herrman, D r H. Schofield and Ms B. Murphy, University of Melbourne, Australia; Professor Z. Metelko, Professor S. Szabo and M rs M. Pibernik-Okanovic, Institute of Diabetes, Endocrinology and Metabolic Diseases and Department of Psychology, Faculty of Philosophy, University of Zagreb, Croatia; Dr N. Quemada and Dr A. Caria, INSERM, Paris, France; Dr S. Rajkumar and Mrs Shuba Kumar, Madras Medical College, India; Dr S. Saxena, All India Institute of Medical Sciences, New Delhi, India; Dr D. Bar-On and Dr M. Amir, Ben-Gurion University, Beer-Sheeva, Israel; Dr Miyako Tazaki, Department of Science, Science University of Tokyo, Japan and D r Ariko Noji, Department of Community Health Nursing, St Luke's College of Nursing, Japan; Dr G. van Heck and Mrs J. De Vries, Tilburg University, The Netherlands; Professor J. Arroyo Sucre and Professor L. Picard-Ami, University of Panama, Panama; Professor M. Kabanov, Dr A. Lomachenkov and Dr G. Burkovsky, Bekhterev Psychoneurological Research Institute, St. Petersburg, Russia; Dr R. Lucas Carrasco, Barcelona, Spain; Dr Yooth Bodharamik and M r Kitikorn Meesapya, Institute of Mental Health, Bangkok, Thailand; Dr S. Skevington, University of Bath, United Kingdom; Dr D. Patrick, Ms M . M artin and Ms D. Wild, Universit y of Washington, Seattle, U.S.A. and; Professor W. Acuda, Dr. J. Mutambirwa, University of Zimbabwe, Harare, Zimbabwe. An international panel of consultants includes: Dr N. K. A aronson, Dr P. Bech, Dr M . Bullinger, Dr H e-Nian Chen, Dr J. Fox-Rushby, Dr C. Moinpour and Dr R. Rosser. Consultants who have advised WHO at various stages of the development of the project have included: Dr D. Buesching, Dr D. Bucquet, Dr L. W. Chambers, Dr B. Jambon, Dr C. D. Jenkins, Dr D. De Leo, Dr L. Fallowfield, Dr P. Gerin, Dr P. Graham, Dr O. Gureje, Dr K. Kalumba, Dr Kerr-Correa, Dr C. Mercier, Mr J. Oliver, Dr Y. H. Poortinga, Dr R. Trotter and Dr F. van Dam, Technical support and funds have been provided by the World Health Organization, the participating centres themselves and by support from the Upjohn Com pany, Kalamazoo, U.S.A., the IPSEN Foundation, Pari s, France and the Carnegie Corporation, New York. Further information and cited WHO documents can be obtained from: The WHOQOL Group, Division of Mental Health, World Health Organization, CH-1211 Geneva 27, Switzerland. 1403
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Page 1: Whoqol Group 1995

7/27/2019 Whoqol Group 1995

http://slidepdf.com/reader/full/whoqol-group-1995 1/7

~ Pergamon 0277-9536 95)00112-3

Soc Sci Med Vol. 41, No. 10, pp. 1403 1409, 1995Copyright © 1995 Elsevier Science Lid

Printed in G reat Britain. All rights reserved0277-9536/95 9.50 + 0.00

THE WORLD HEALTH ORGANIZATION QUALITY OF

LIFE ASSESSMENT WHOQOL): POSITION PAPER FROM

THE WORLD HEALTH ORGANIZATION

T H E W H O Q O L G R O U P *

A ~ t r a c t - - T h i s p a p e r d e s c r i b e s t h e W o r l d H e a l t h O r g a n i z a t i o n ' s p r o j e c t t o d e v e l o p a q u a l i t y o f l i f ei n s t r u m e n t ( t h e W H O Q O L ) . I t o u t li n e s th e r e a s o n s t h a t t h e p r o j ec t w a s u n d e r t a k e n , t h e t h i n k i n g t h a tu n d e r l i e s th e p r o je c t , t h e me th o d th a t h a s b e e n f o l lo we d in i t s d e v e lo p me n t a n d th e c u r r e n t s t a tu s o f th ep r o je c t . Th e W HO QO L a ss es se s in d iv id u a l s ' p e r c e p t io n o f th e i r p o s i t io n in li fe in th e c o n te x t o f th e c u l tu r ea n d v a lu e s y s tems in wh ic h th e y l iv e a n d in r e l a t io n to th e i r g o a ls , e x p e c ta t io n s , s t a n d a r d s a n d c o n c e r n s .I t h a s b e e n d e v e lo p e d c o l l a b o r a t iv e ly in s e v e r al c u l tu r a l ly d iv e r s e c e n t r e s o v e r f o u r y e a rs . P i lo t in g o f th eW HO QO L o n s o me 4 5 0 0 r e s p o n d e n t s in 1 5 c u l tu r a l s e t t in g s h a s b e e n c o mp le te d . On th e b a s i s o f th i s d a ta

th e r e v i se d W H OQ OL F ie ld T r i a l F o r m h a s b e e n f in a li z e d , a n d f ie ld t e s t in g is c u r re n t ly in p r o g re s s . Th eW HO QO L p r o d u c e s a mu l t i - d im e n s io n a l p r o f il e o f sc o r e s a c r o s s s ix d o ma in s a n d 2 4 s u b - d o m a in s o fqua l i ty of l i f e .

Key word~ual i ty of l i f e assessment

RATIONALE FOR THE DEVELOPMENT OF THEWHOQOL

T h e W o r l d H e a l t h O r g a n i z a t i o n ( W H O ) i n i t ia t e d i tsp r o j e c t t o d e v e l o p a n i n t e r n a t i o n a l q u a l i t y o f l if e

a s s e s s m e n t f o r s e v e r a l r e a s o n s . T h e i m p o r t a n c e o f

i n c l u d i n g a c o n s i d e r a t i o n o f p a t i e n t s ' q u a l i t y o f li fe in

t r e a t m e n t d e c is i on s , a p p r o v a l o f n e w p h a r m a c e u t i -

c a l s a n d p o l i c y re s e a r c h ( p r o g r a m m e e v a l u a t i o n a n d

r e s o u r c e a ll o c a t i o n ' i s i m m e d i a t e l y a p p a r e n t a n d h a s

b e e n e x t e n s i v e l y d o c u m e n t e d e l s e w h e r e ( s e e R e f . [ 1 ] ) .

N o t s o o b v i o u s a r e t h e b e n e fi t s o f c o n s i d e r i n g q u a l i t y

o f li fe f r o m a c r o s s - c u l t u r a l p e r s p e c t i v e .H a v i n g a n i n t e r n a t i o n a l q u a l i t y o f li fe a s s e s s m e n t

s u c h as th e W H O Q O L m a k e s i t p o s si b le t o ca r ry o u t

q u a l i t y o f li f e r e s e a r c h c o l l a b o r a t i v e l y i n d i f f e r e n t

c u l t u r a l s e t t i n g s , a n d t o c o m p a r e d i r e c t l y r e s u l t s

o b t a i n e d i n t h e s e d i f f e r e n t s e t t i n g s . I n b a s i c r e s e a r c h

i n t o q u a l i t y o f li fe , i m p o r t a n t n e w q u e s t i o n s c a n b e

* T h i s p a p e r w a s w r it t e n b y D r W i ll e m K u y k e n o n b e h a l f o f th e W H O Q O L G r o u p . T h e W H O Q O L g r o u p c o m p r i se s ac o o r d in a t in g g r o u p , c o l l a b o r a t in g in v e s t ig a to r s in e a c h o f th e fi eld c e n t r e s a n d a p a n e l o f c o n s u l t a n t s . Dr J . O r le y d i r ec t sth e p r o je c t . He h a s b e e n a s si s t ed b y Dr W . Ku y k e n , D r N . S a r to r iu s a n d D r M . P o we r . I n th e f ie ld c e n t re s c o l l a b o r a t in gin v e s t ig a to r s a r e : P r o f e ss o r H . He r r m a n , D r H . S c h o f ie ld a n d M s B . M u r p h y , Un iv e r s i ty o f M e lb o u r n e , Au s t r a l i a ;P r o f e s s o r Z . M e te lk o , P r o f e s s o r S . S z a b o a n d M r s M . P ib e r n ik - Ok a n o v ic , I n s t i tu t e o f D ia b e te s , En d o c r in o lo g y a n dM e ta b o l i c D is e a s e s a n d De p a r tme n t o f P s y c h o lo g y , F a c u l ty o f P h i lo s o p h y , Un iv e r s i ty o f Za g r e b , Cr o a t i a ; Dr N .Q u e m a d a a n d D r A . C a ri a , I N S E R M , P a r is , F ra n c e ; D r S . R a j k u m a r a n d M r s S h u b a K u m a r , M a d r a s M e d i c a l C o l le g e,I n d ia ; Dr S . S a x e n a , A l l I n d ia I n s t i tu t e o f M e d ic a l Sc ie n ce s, Ne w De lh i , I n d ia ; Dr D . Ba r - On a n d D r M . Am ir ,Be n - Gu r io n Un iv e r s i ty , Be e r - S h ee v a , Is r a e l; Dr M iy a k o T a z a k i , D e p a r tm e n t o f S cien ce , S c ie n c e Un iv e r s ity o f To k y o ,J a p a n a n d D r A r i k o N o j i , D e p a r t m e n t o f C o m m u n i t y H e a l t h N u r s i n g , S t L u k e ' s C o l le g e o f N u r s in g , J a p a n ; D r G .v a n He c k a n d M r s J . De Vr ie s , T i lb u r g Un iv e r s i ty , Th e Ne th e r l a n d s ; P r o f e s s o r J . Ar r o y o S u c r e a n d P r o f e s s o r L .P i c a rd - A m i , U n i v e r s it y o f P a n a m a , P a n a m a ; P r o f e s s or M . K a b a n o v , D r A . L o m a c h e n k o v a n d D r G . B u r k o v sk y ,Be k h te r e v P s y c h o n e u r o lo g ic a l Re s e a r c h I n s t i tu t e , S t . P e te r s b u r g , Ru s s ia ; Dr R . Lu c a s Ca r r a s c o , Ba r c e lo n a , S p a in ; DrY o o t h B o d h a r a m i k a n d M r K i t i k o r n M e e s a p y a , I n st i t u t e o f M e n t a l H e a l t h , B a n g k o k , T h a i l a n d ; D r S . S k e v in g t o n ,U n i v e r s it y o f B a t h , U n i t e d K i n g d o m ; D r D . P a t r i c k , M s M . M a r t i n a n d M s D . W i l d, U n i v e r s i ty o f W a s h i n g t o n , S e a tt le ,U . S . A . a n d ; P r o f e s s o r W . Ac u d a , D r . J. M u ta m b i r w a , Un iv e r s i ty o f Z imb a b w e , Ha r a r e , Z imb a b w e .

An in te r n a t io n a l p a n e l o f c o n s u l t a n t s in c lu d e s: Dr N . K . A a r o n s o n , Dr P . Be c h , Dr M . Bu l l in g e r, Dr H e - Nia n C h e n ,D r J . F o x - R u s h b y , D r C . M o i n p o u r a n d D r R . R o s s e r. C o n s u l t a n t s w h o h a v e a d v is e d W H O a t v a r i o u s s ta g e s o f t h e

d e v e lo p me n t o f th e p r o je c t h a v e in c lu d e d : Dr D . B u e s c h in g , Dr D . Bu c q u e t , Dr L . W . Ch a mb e r s , Dr B . J a mb o n , DrC . D . J e n k in s , Dr D . De Le o , Dr L . F a l lo wf ie ld , Dr P . Ge r in , Dr P . Gr a h a m, Dr O . Gu r e je , Dr K . Ka lu mb a , DrKe r r - Co r r e a , Dr C . M e r c ie r , M r J . O l iv e r , Dr Y . H . P o o r t in g a , Dr R . T r o t t e r a n d Dr F . v a n Da m,

Te c h n ic a l s u p p o r t a n d f u n d s h a v e b e e n p r o v id e d b y th e W o r ld He a l th Or g a n iz a t io n , th e p a r t i c ip a t in g c e n t r e s th e ms e lv e sa n d b y s u p p o r t f r o m t h e U p j o h n C o m p a n y , K a l a m a z o o , U . S . A . , t h e I P S E N F o u n d a t i o n , P a r is , F r a n c e a n d t h e C a r n e g ieC o r p o r a t i o n , N e w Y o r k .

F u r t h e r i n f o r m a t i o n a n d c i t e d W H O d o c u m e n t s c a n b e o b t a i n e d f r o m : T h e W H O Q O L G r o u p , D i v i s i o n o f M e n t a lHe a l th , W o r ld He a l th Or g a n iz a t io n , CH- 1 2 1 1 Ge n e v a 2 7 , S wi tz e r l a n d .

1403

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1404 T he W H O Q O L G r o u p

a s k e d . F o r e x a m p l e , s tu d i e s c a n b e u n d e r t a k e n t o

i m p r o v e o u r u n d e r s t a n d i n g o f th e q u a l i t y o f l if e

c o n s t r u c t i t s e l f , a n d t h e e x t e n t t o w h i c h i t i s i n d i v i d -

u a l ly , s o c i a ll y o r c u l t u r a l l y d e t e r m i n e d .

I n e p i d e m i o l o g i c a l r e s e a rc h , m u l t i - c e n t r e r e s e a r ch

w i t h th e W H O Q O L w i ll p e r m i t q u es t io n s t o b e

a d d r e s s e d w h i c h w o u l d n o t b e p o s s i b l e in s i n g l e s i te

s t u d i es [ 2 ] . F o r e x a m p l e , t o w h a t e x t e n t a r e c e r t a in

d i s e a s es a n d s y m p t o m s ( e . g. a r t h r i t is , s c h i z o p h r e n i a ,

h e a d a c h e , b a c k p a i n ) a n d t h e i r ef f ec t o n q u a l i t y o f li f e

m e d i a t e d b y s o c i a l a n d c u l t u r a l f a c t o r s ?

M e t h o d o l o g i c a l l y , m u l t i - c e n t r e c o l l a b o r a t i v e s t u d -

i es c a n p r o v i d e m u l t i p l e s im u l t a n e o u s r e p l i c a t i o n s o f

a f i n d in g , a d d i n g c o n s i d e r a b l y t o t h e c o n f i d e n c e w i t h

w h i c h f i n d i n g s c a n b e a c c e p t e d . P r a c t i c a l ly , a c c u m u -

l a t i o n o f c a s e s i n q u a l i t y o f l i fe s t u d i e s , p a r t i c u l a r l y

w h e n s t u d y i n g r a r e d i s o r d e r s , i s s o m e t i m e s h e l p e d b y

g a t h e r i n g d a t a i n s e v e r a l s e t t i n g s .

T h e r e a r e s e v e r a l i m p o r t a n t p r o j e c t s u n d e r w a y t o

t r a n s l a t e e x i s t i n g s t a n d a r d i z e d q u a l i t y o f l i f e

m e a s u r e s f o r u s e i n d i f f e r e n t c u l t u r a l s e t t i n g s [ 3, 4 ].

H o w e v e r , t h e s e p r o j e c t s h a v e te n d e d t o b e c o n c e r n e d

m o s t l y w i t h t h e l a n g u a g e s o f E u r o p e a n d N o r t h

A m e r i c a . F u r t h e r m o r e , a s w e h a v e a r g u e d e l s e w h e r e

[ 5 ] , t h e d a n g e r w i t h t h e t r a n s l a t i o n o f a n e x i s t i n g

m e a s u r e i s t h e d i s t o r t i o n i n r e s u l ts t h a t c a n a r i s e f r o m

t h e u s e o f i n a p p r o p r i a t e h e a l t h - r e l a t e d q u a l i ty o f l i fe

c o n s t r u c t s , w h i c h a r e v a l i d i n t h e s o u r c e l a n g u a g e

s e t t i n g , b u t n o t i n t h e t a r g e t l a n g u a g e s e t t i n g . F o r

e x a m p l e , a u t o n o m y i s a n i m p o r t a n t d i m e n s i o n r e -

l a t e d t o q u a l i t y o f l i f e w h i c h i s v a l u e d i n s o m e

c u l t u r e s b u t h a s p e j o r a t i v e c o n n o t a t i o n s o f s e lf is h n es s

a n d r e j e c ti o n i n o t h e r s [ 6 ] . E q u a l l y i m p o r t a n t , t h e r e

m a y b e a s p e c t s o f h e a l t h - r e l a t e d q u a l i t y o f l i fe w h i c h

a r e i m p o r t a n t i n t h e t a r g e t c u l tu r e , b u t w h i c h a r e n o t

c o v e r e d b y t h e s o u r c e i n s t r u m e n t .

T h e d e v e l o p m e n t o f t h e W H O Q O L a s s es s m e n t

a r i s e s , t h e r e f o r e , f r o m t h e n e e d f o r a g e n u i n e l y i n t e r -

n a t i o n a l q u a l i t y o f l if e a s s e s sm e n t . I n a d d i t i o n , W H O

i n i t i a t e d i t s w o r k o n q u a l i t y o f l i f e a s s e s s m e n t a s a

w a y o f r es t a ti n g it s c o m m i t m e n t t o t h e p r o m o t i o n o f

a n h o l i s t i c a p p r o a c h t o h e a l t h a n d h e a l t h c a re . H e a l t h

c a r e i s e s s e n t i a l l y a h u m a n i s t i c t r a n s a c t i o n b e t w e e n a

h e a l t h c a r e p r o f e s s i o n a l a n d a p a t i e n t , w h e r e t h e

p a t i e n t s w e l l -b e i n g is t h e p r i m a r y a i m .

p r o v i d e d i f f e r e n c e s in l e v e l o f i n d u s t r i a l i z a t i o n , a v a i l -

a b l e h e a l t h s e r v ic e s , a n d o t h e r m a r k e r s r e l e v a n t t o t h e

m e a s u r e m e n t o f q u a l i t y o f l if e ( e .g . r o l e o f t h e f a m i l y ,

p e r c e p t i o n o f t i m e , p e r c e p t i o n o f s e l f , d o m i n a n t

r e l i g i o n ) . F i f t e e n c e n t r e s p a r t i c i p a t e d i n t h e d e v e l o p -

m e n t a n d p i l o ti n g o f th e W H O Q O L P i lo t F o r m

(T ab le 1 ) .

A s e c o n d f e at u re o f th e W H O Q O L m e t h o d i s t he

i t e r a t i v e i n p u t o f q u a l i t y o f l i f e r e s e a r c h e r s a n d t h e

c o n s o l i d a t i o n a n d r e v i s i o n o f t h i s i n f o r m a t i o n a t

g r a s s r o o t s l ev e l a t e a c h s t a g e o f t h e i n s t r u m e n t s

d e v e l o p m e n t . T h i s e n s u r e s t h a t b o t h e x i s t in g e x p e r -

t i s e i n q u a l i t y o f l if e a s s e s s m e n t a n d t h e v i e w s o f

p r a c t i s in g h e a l t h p r o f e s s i o n a l s a n d p a t i e n t s a r e r e p -

r e s e n t e d i n t h e c o n s t r u c t i o n o f t h e i n s t r u m e n t . I n

q u a l i t y o f l if e a s s e s s m e n t , w h e r e t h e p a t i e n t s v i e w -

p o i n t i s p a r a m o u n t t h e a c c e p t a b i li t y o f t h e m e a s u r e

t o p a t i e n t s i s f u n d a m e n t a l . F u r t h e r m o r e , a s i t i s

h e a l t h p r o f e s s i o n a l s a n d r e s e a rc h e r s w h o a r e l i k e ly

t o u s e th e W H O Q O L i n s tr u m e n t , i t is i m p o r t a n t

t h a t t h e i n s t r u m e n t i s a c c e p t a b l e t o t h e s e g r o u p s a s

wel l .

A t h i r d f e a tu r e o f t h e W H O Q O L m e t h o d i s t h e us e

o f a tr i ed a n d t e st ed W H O t r a n s la t i o n m e th o d . W H O

h a s a c c r u e d c o n s i d e r a b l e e x p e r ie n c e i n t r a n s l a t i n g

h e a l t h s t a t u s m e a s u r e s . I n b r i e f , a n i t e r a t i v e p r o c e s s

o f f o r w a r d a n d b a c k w a r d t r a n s l a t i o n i s c o m p l e -

m e n t e d b y a r e v i e w p r o c e s s b y m o n o l i n g u a l a n d

b i l in g u a l g r o u p s t o e n s u r e c o n c e p t u a l , s e m a n t i c a n d

t e c h n i c a l e q u i v a l e n c e i n d i ff e r e n t la n g u a g e v e r s i o n s o f

t h e W H O Q O L ( s ee R e f. [8 ]) .

STEPS IN THE DEVELOPMENT OF THE WHOQOL

T h e W H O Q O L d e v e l o p m e n t p r o ce s s w a s m a d e u p

o f s e v e r a l s t a g e s ( T a b l e 2 ) , a n d i s m o r e f u l l y d o c u -

m e n t e d e l s e w h e r e [ 9 - 1 1 ] .

1) Concept c larif ication

T h e f i rs t s t a g e , c o n c e p t c l a r i f i c a t i o n in v o l v e d a r r i v -

i n g a t a n a g r e e d u p o n d e f i n it i o n o f q u a l it y o f l i f e a n d

a n a p p r o a c h t o i n t e r n a t i o n a l q u a l i t y o f l i f e a s s es s -

m e n t . A l t h o u g h t h e r e i s n o c o n s e n s u a l d e f i n i t i o n o f

q u a l i t y o f l if e, t h e r e i s c o n s i d e r a b l e a g r e e m e n t a m o n g

THE WHOQOL METHOD

T h e W H O Q O L d e v e l o p m e n t m e t h o d h a s s ev e ra l

u n i q u e f e a t u re s . F i r s t t h e m e a s u r e i n v o l v e s a c o l l a b -

o r a t i v e o r s i m u l t a n e o u s d e v e l o p m e n t a p p r o a c h t o

i n t e r n a t i o n a l i n s t r u m e n t d e v e l o p m e n t [ 5, 7 ]. S e v e r a l

c u l t u r a l l y d i v e r s e c e n t r e s w e r e i n v o l v e d i n o p e r a -

t i o n a l iz i n g th e i n s t r u m e n t s d o m a i n s o f q u a l i t y o f l if e,

d r a f t i n g a n d s e l ec t in g q u e s t io n s , g e n e r a t i n g r e s p o n s e

s c a le s a n d p i l o t t e s ti n g . W i t h t h i s a p p r o a c h s t a n d a r d -

i z a t io n , e q u i v a l e n c e b e t w e e n s e t t i n g s a n d t r a n s l a t i o n

i s s u e s w e r e a t t h e f o r e f r o n t o f t h e d e v e l o p m e n t

p r o c e s s . T o e n s u r e t h a t t h e c o l l a b o r a t i o n w a s g e n -

u i n e l y i n t e r n a t i o n a l , f i e l d c e n t r e s w e r e s e l e c t e d t o

Table 1. Field centres involved in the development of WHOQOLPilot Instrument

Melbourne AustraliaZabreb Croatia

Paris FranceDelhi India

Madras India

Beer-Sheeva IsraelTokyo Japan

Tilberg The NetherlandsPanama City PanamaSt Petersburg Russia

Barcelona SpainBangkok Thai land

Bath U.K.Seattle U.S.A.

Harare Zimbabwe

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W H O Q O L

Table 2. Stages in the developmentof the WHOQOL*

14 5

Stage M ethod Prod ucts Objectives

(1) Con cep t c lari f icat ion In tern at iona l exper t Qo L defin i tionrevi ew S t u d y p ro t o co l

(2) Qual i ta t ive p i lo t

(3 ) D ev e l o p m en t p i lo t

(4) Field test

Expert review

F o c u s g r o u p sEx p e r t an d l ay q u es t i o n

w r i t i n g p an e l

A d m i n i s t ra t i o n o fW H O Q O L P i lo t F o r m i n

15 fie ld cent res to 250p a t i en t s an d 5 0 h ea l t h y

re sp o n d en t s

Series of smal ler scale

studies involving c leara n d h o m o g e n e o u s

p o p u l a t i o n s , l o n g i t u d in a ldesign and parallel u seo f o t h e r n a t i o n a l /

i n t e rn a t i o n a l Q o L m easu re s

D ef i n i t i o n s o f d o m a i n sa n d s u b - d o m a i n s

G l o b a l q u es t i o n p o o l

300 quest ion standardizedq u es t i o n n a i re

C o m m o n c o r e d o m a in

s t ru c t u reCo m m o n 1 0 0 -q u es t i o n

p o o lS t an d a rd i zed an d c ro ss -

nat ional ly equivalent

response scales

Establ i sh ing an agreedupo n defin it ion of

q u a l i t y o f l i fe an d anap p ro ach t o i n t e rn a t i o n a lq u a l i ty o f l i fe a s se ssm en t

Ex p l o ra t i o n o f t h e

qual i ty of l i fe concept

ac ro ss cu l t u re s an dq u es t i o n g en e ra t i o n

R e f i n e t h e W H O Q O L

st ru c t u reReduce the g lobal

q u es t i o n p o o l

To fu rther establ ish the

p sy ch o m e t r i c p ro p e r t i e so f th e W H O Q O L

* R e p r o d u c e d w i t h p e r m i s s i o n f r o m W H O Q O L G r o u p I 1 0 ] .

q u a l i t y o f l if e r e s ea rch e r s ab o u t s o m e o f th e ch a rac -

ter i st i cs o f the qu al i ty o f li fe cons t ruc t . F i rs t , i s the

g ro wi n g r eco g n i t i o n t h a t q u a l i t y o f l i f e i s s u b j ec t i v e

[12-15] .

T h i s s u b j ec t i v e d e f i n in g f ea t u re o f q u a l it y o f li fe

can b e b ro k en d o wn i n t o l ev e l s . L i n d s t r fm [1 6 ]

d is t ingu ishes percep t ions o f ob jec t ive cond i t ions (e .g .

mater ia l resources ) and sub jec t ive cond i t ions (e .g .

s a t i s f a c t i o n w i t h r e s o u r c e s ) . T h e W H O Q O L G r o u p

[10] ma ke a s imi lar d i s t inc t ion , b u t re fer to l eve ls o f

q u e s ti o n in g . T h e y p r o p o s e t h a t q u e s t i o n s c o n c e r n e d

wi t h t h e p e r s o n s p e rcep t i o n c an a s k fo r :

( a ) i n f o r m a t i o n a b o u t f u n c t i o n in g ( e. g. H o w

m an y h o u r s d i d y o u s l eep l a s t n i g h t ? ) ;

(b ) g l o b a l ev a l u a t i o n s o f fu n c t i o n i n g (e .g . H o w

well d o y o u s l eep ? ) ; an d

(c) h i g h l y p e r s o n a l i zed ev a l u a t i o n s o f fu n c t i o n i n g

(e .g . H ow sa ti sf ied are yo u wi th y ou r s leep? ) .

A l t h o u g h t h e p e r s o n s r e p o r t o f f u n c t i o n i n g i s

i m p o r t a n t h e a lt h st a tu s in f o r m a t i o n , t h e W H O Q O LG ro u p a rg u es t h a t i t i s q u es t i o n s ab o u t t h e p e r s o n s

g l o b a l ev a l u a t i o n s o f b eh av i o u r s , s t a t e s an d ca -

paci t i es and sa t i s fac t ion /d i ssa t i s fac t ion wi th be-

h av i o u r s , s t a t e s an d cap ac i t i e s t h a t i n fo rm ab o u t

qual i ty o f l i fe .

A s eco n d a rea o f co n s en s u s i s t h e m u l t i -d i m en -

s ional na tu re o f qual i ty o f l ife [12 , 17-19]. A t min i -

m u m , q u a l i t y o f li fe i n c lu d es t h e fo l l o wi n g

d i m en s i o n s : p h y s i ca l ( i n d i v i d u a ls p e rcep t i o n o f t h e i r

p h y s i ca l st a te ) , p s y ch o l o g i ca l ( i n d i v id u a l s p e rcep t i o n

of the i r cogn i t ive and af fec t ive s ta te) and soc ia l

( i n d i v i d u a ls p e rcep t i o n o f t h e i n te rp e r s o n a l r e l a t i o n -sh ips and soc ia l ro les in the i r l ife ). So me qual i ty o f l ife

m eas u re s i n c l u d e fu r t h e r d i m en s i o n s fo r co n cep t u a l ,

p r a g m a t i c o r e m p i r i c a l r e a s o n s . T h e E u r o Q o L i n -

e ludes a usu al ac t iv i t ies d im ens ion [20], wh ic h i s

s i m i la r to th e ro l e fu n c t i o n i n g d i m en s i o n i n c l u d ed in

t h e M e d i c a l O u t c o m e s S t u d y G e n e r a l H e a l t h S u r -

v e y - - S h o r t F o r m ( S F - 3 6) [ 3 ] . T h e S i c k n es s I m p a c t

Prof i le [21] inc ludes w or k as a separa te d im ens ion .

T h e W H O Q O L i n c lu d e s a sp i ri tu a l d i m e n s i o n ( th e

p e r s o n s p e rcep t i o n o f m e an i n g i n l i fe , o r t h e o v e r -

arch ing personal be l ie fs tha t s t ruc tu re and qual i fy

ex p e r ien ce ) [1 0 ] . W e h av e a rg u ed e l sewh e re t h a t t h e

b ro ad p h y s i ca l , p s y ch o l o g i ca l , s o c i a l an d s p i r i t u a l

d o m a i n s o f q u a l i t y o f l if e a r e u n i v e r s a l v a l u e s ac ro s s

cu l tu res [5 ] , and there i s some ev idence tha t th i s i s so

[221.

Th i rd , qu al i ty o f li fe inc ludes bo th pos i t ive (e .g .

ro l e fu n c t i o n i n g , co n t en t m en t an d m o b i l i t y ) an d

negat ive d imens ions (e .g . negat ive fee l ings , depen-

d en ce o n m ed i ca t i o n , f a t ig u e , p a i n ) [2 3 ] . An i n q u i ry

i n t o q u a l i t y o f li fe m u s t ad d re s s i n d i v i d u a l s p e rcep -

t i o n s o f b o t h p o s i t i v e an d n eg a t i v e d i m en s i o n s .

Qu al i ty o f li fe was def ined , therefo re , as indiv id-

ua l s pe rcep t ion o f t he i r pos i t i on i n l if e in t he con t ex t

o f t he cu l t ure and va lue sy s t ems i n wh ich t hey l i v e and

in re la t i on t o t he i r goa l s , e xpec ta t i on s , s t andards and

concerns. I t is a b ro ad r an g i n g co n cep t , i n co rp o ra t i n g

i n a co m p l ex way i n d i v i d u a l s p h y s i ca l h ea lt h ,

psyc ho lo g ica l s ta te , l eve l o f independ ence , soc ia l re-

la t ionsh ips , personal be l ie fs and the i r re la t ionsh ips to

sa l ien t fea tu res o f the e nv i r onm ent [9, 10] . Th is defi -

n i t ion h igh l igh ts the v iew tha t qu al i ty o f li fe i s

sub jec t ive , inc ludes bo th pos i t ive and negat ive face t s

o f li fe and i s mu l t i -d imens ional .

T h e r eco g n i t i o n o f t h e m u l t i-d i m en s i o n a l n a t u re o f

q u a l i t y o f li fe i s fu r t h e r r e f l e ct ed in t h e W H O Q O L

s t ru c t u re . T h e W H O Q O L i s o r g a n i z e d in t o s ix b r o a d

d o m a i n s o f q u a l i t y o f l if e. T h es e a r e :

( a ) p h y s i ca l d o m a i n ;

(b ) p s y ch o l o g i ca l d o m a i n ;

(c) l eve l o f independe nce;

(d ) soc ia l re la t ionsh ips ;

( e ) en v i ro n m en t ; an d

(f ) sp i r i tua l i ty / re l ig ion /personal be l ie fs .

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1406 T he W H O Q O L G r o u p

W i t h i n e a c h d o m a i n s e v e r a l s u b - d o m a i n s ( f a c e t s )

o f q u a l i t y o f l if e s u m m a r i z e t h a t p a r t i c u l a r d o m a i n o f

q u a l i t y o f l if e. F o r e x a m p l e , th e p h y s i c a l d o m a i n

i n c l u d e s t h e f a c e t s Pain and d iscomfor t a n d Energy

and fa t i gue .

O n c e a d e f i n it i o n o f q u a l i t y o f li fe a n d a n a p p r o a c h

t o i n t e r n a t i o n a l q u a l i t y o f l if e a s s e s s m e n t h a d b e e n

a g r e e d u p o n , a d e t a i l e d s t u d y p r o t o c o l f o r t h e f u r t h e r

d e v e l o p m e n t o f th e W H O Q O L w a s w r i tt e n [9 ].

2) Qualitative pilot

T h e q u a l i t a t i v e p i l o t i n v o l v e d t h e e x p l o r a t i o n o f

t h e q u a l i t y o f l i f e c o n s t r u c t a c r o s s c u l t u r e s , t h e

d r a f t i n g o f q u e s t io n s a n d t h e g e n e r a t i o n o f r e s p o n s e

sca l e s .

D e term in ing the W H O Q O L dom ains and fac e t s .

D e t e r m i n i n g t h e d o m a i n s a n d f a c e ts o f q u a l i t y o f li fe

t o b e a d d r es s e d b y t he W H O Q O L i n v o lv e d se v e ra l

s t e p s . F i r s t c o n s u l t a n t s a n d p r i n c i p a l i n v e s t i g a t o r s

f r o m e a c h o f t h e fi e l d c e n t r e s d r a f t e d a p r o v i s i o n a l li s t

o f d o m a i n s a n d f a c et s o f q u a l i t y o f l if e.

F o c u s g r o u p s , c a r e f u ll y m o d e r a t e d g r o u p i n t e r-

v i e w s , w e r e u s e d a s a w a y o f s o c i a l l y g e n e r a t i n g i d e a s

a b o u t q u a l i t y o f li fe a m o n g t a r g e t e d p o p u l a t i o n s

( h e a l t h y i n d i v i d u a l s , i n d i v i d u a l s w i t h a d i s e a s e /

i m p a i r m e n t a n d h e a l t h p r o f e s s i o n a l s ) . T h i s m e t h o d

w a s u s e f u l w i t h i n t h e c o n t e x t o f t h e W H O Q O L

p r o j e c t b e c a u s e t h e s a m e i n t e r v i e w s c h e d u l e c a n

b e u s e d i n d i f f e r e n t c u l t u r a l s e t t i n g s a n d d i f f e r e n t

g r o u p s w i t h i n a c u l t u r a l s e t t i n g ( e . g . r u r a l f a r m e r s

a n d u r b a n o t ti c e w o r k e r s ) , a n d t h e d a t a c a n b e

a g g r e g a t e d . T o e n s u r e s t a n d a r d i z a t i o n b e t w e e n

c e n t r e s , p r i n c i p a l f o c u s g r o u p m o d e r a t o r s w e r e

t r a i n e d c e n tr a l l y a t W H O , G e n e v a . B e c a u s e t h e d a t a

y i e l d e d b y f o c u s g r o u p s c a n b e t h e p r o d u c t o f s o c ia l

d y n a m i c s w i t h i n t h e g r o u p , t h e d a t a f r o m s e v e r a l

f o c u s g r o u p s s a m p l e d f r o m t h e s a m e p o p u l a t i o n

w e r e a l w a y s c o m p a r e d t o p r o t e c t a g a i n s t t h i s p o s s i -

b i l i t y .

A f i r s t p h a s e o f f o cu s g r o u p s w a s c o n d u c t e d w i t h

p a t i e n t s a n d h e a l t h y p e r s o n s t o e x a m i n e t h e m e a n i n g ,

v a r i a t i o n a n d p e r c e p t u a l e x p e r i e n c e o f t h e q u a l i t y o fl if e c o n s t r u c t i n e a c h o f t h e W H O Q O L f ie ld c e n t r es

[ 2 4 ] . T h e d a t a f r o m t h e s e f o c u s g r o u p s w e r e l a r g e l y

c o n f i r m i n g o f t h e p r o v i s i o n a l d o m a i n a n d f a c e t s t r u c -

t u r e t h a t h a d b e e n d r a f t e d b y t h e c o n s u l t a n t s a n d

p r i n c i p a l i n v e s t i g a to r s . F o r e x a m p l e p h y s i c a l h e a l t h ,

h a p p i n e s s , f a m i l y s u p p o r t , w o r k s a t is f a c t i o n a n d

f i n a n c i a l s t a t u s w e r e a m o n g t h e f a c e t s t h a t w e r e

s p o n t a n e o u s l y m e n t i o n e d i n o v e r h a l f t h e n i n e f i e l d

c e n t r e s p a r t i c i p a t i n g in t h i s p h a s e o f w o r k ( B a n g k o k ,

B a t h , M a d r a s , M e l b o u r n e , P a n a m a , S t . P e t e r s b u r g ,

S e a t t l e , T i l b u r g a n d Z a g r e b ) . B a s e d o n t h e f o c u s

g r o u p d a t a s e v e r a l re v i s io n s w e r e m a d e t o t h e p r o -

p o s e d s t r u c t u r e o f t h e i n s tr u m e n t . F o r e x a m p l e r e l i-

g i o n a n d s p i r i t u a l i t y w e r e c o n s i s t e n t l y s u g g e s t e d a s

i m p o r t a n t d i m e n s i o n s o f q u a l i t y o f l i f e . F o r s u b -

s e q u en t w o r k o n t h e W H O Q O L R e l i g i o n /

S p i r i t u a l i t y / P e r s o n a l b e l ie f s w a s i n c l u d e d a s a s e p a r -

a t e d o m a i n o f q u a l i t y o f l i fe .

O n t h e b a s i s o f th e f o c u s g r o u p d a t a d e t a i l e d

d e f i n i t i o n s o f f a c e t s o f q u a l i t y o f l if e w e r e d r a f t e d . A

f a c et d e f i n i ti o n c o n s i s te d o f a n e x p l a n a t i o n o f w h a t

w a s m e a n t b y t h e f a ce t , a d e s c r i p t io n o f v a r i o u s

d i m e n s i o n s a l o n g w h i c h a r a t i n g c o u l d b e m a d e f o r

t h a t f a c e t , a n d a l i s t in g o f s o m e e x a m p l e s i t u a t i o n s o r

c o n d i t i o n s t h a t m i g h t s i g n i f i c a n t l y a f f e c t t h a t f a c e t a t

v a r i o u s l e v e l s o f i n t e n s i t y ( e . g . Appe nd ix ) . F u r t h e r

f o c u s g r o u p s w e r e t h e n h e l d w i t h p a t i e n t s , h e a l t h y

p e r s o n s a n d h e a l t h p e r s o n n e l i n e a c h o f th e f ie l d

c e n t r e s ( B a n g k o k , B a t h , H a r a r e , M a d r a s , M e l -

b o u r n e , P a n a m a , S t . P e t e r s b u r g , S e a t tl e , T i l b u r g ,

Z a g r e b ) .

E a c h f o c u s g r o u p w a s m a d e u p o f s ix to e i g h t

i n d i v i d u a l s , d e m o g r a p h i c a l l y r e p r e s e n t a t i v e o f t h e

t a r g e t p o p u l a t i o n i n t e r m s o f g en d e r , a g e , e d u c a t i o n a l

b a c k g r o u n d , s o c i o - e c o n o m i c g r o u p a n d e t h n i c g r o u p .

T h e p r o c e d u r e f o l lo w e d i n t h e f oc u s g r o u p s i n v o l v e d

d e t a i l e d o r i e n t a t i o n a n d i n s t r u c t i o n s , f o l l o w e d b y a

f a c e t - b y - f a c e t d i s c u s s i o n i n w h i c h p a r t i c i p a n t s w e r e

a s k e d h o w e a c h f a c e t a f f e c t e d th e i r q u a l i t y o f l if e a n d

h o w o n e m i g h t b e s t a s k a b o u t t h a t f a c e t .

F o c u s g r o u p p a r t i c i p a n t s fr o m t h e f o l l o w i n g p o p u -

l a t i o n s w e r e s a m p l e d a t e a c h f i e ld c e n t r e : p e r s o n s i n

c o n t a c t w i t h h e a l t h s e r v ic e s ( b o t h i n p a t i e n t s a n d

o u t p a t i e n t s w i t h a c u t e a n d c h r o n i c d i s o r d e r s ) , p e r -

s o n s f r o m t h e g e n e r a l p o p u l a t i o n ( i n c l u d i n g s o m e

w h o w e r e i n f o r m a l c a r e g i v e rs ) a n d h e a l t h p e r s o n n e l .

A m i n i m u m o f tw o f o c u s g r o u p s w e r e c o n d u c t e d f o r

e a c h o f th e t h r e e p o p u l a t i o n g r o u p s . H o w e v e r , w h e r e

t h e d a t a f r o m a n y o f t h e s e t w o g r o u p s w e r e d i s s i m i -

l a r , e x t r a f o c u s g r o u p s w e r e c o n d u c t e d u n t il t h e d a t a

s h o w e d a m a r k e d p a t t e r n a n d f u r t h e r f o c u s g r o u p s

a d d e d n o t h i n g n e w . I n a d d i t i o n , i n s o m e c e n t r e s

f u r t h e r f o c u s g r o u p s w e r e r u n t o s a m p l e i n d i v i d u a ls

f r o m v e r y d i f f e r in g p o p u l a t i o n s ( e .g . r u r a l a n d u r b a n ,

y o u n g a n d o l d ) .

T h i s s e c o n d p h a s e o f f o c u s g r o u p w o r k p r o v i d e d

c o n s i d e ra b l e e n d o r s e m e n t o f t h e p r o p o s e d W H O -

Q O L s t r u c tu r e . H o w e v e r , i n s e v er a l i n s t an c e s t h e

d a t a c a l l e d f o r r e v is i o n s t o t h e W H O Q O L f a ce t

s t r u c t u r e a n d d e f i n i t i o n s .Dra f t ing a nd se lec ting ques tions . T h e f o c u s g r o u p

t r a n s c r i p t s c o n t a i n e d m a n y v a l u a b l e s u g g e s t i o n s f o r

W H O Q O L q u e s ti o n s. O n c o m p l e ti o n o f t h e fo c us

g r o u p w o r k , a q u e s t i o n w r i ti n g p a n e l w a s a s s e m b l e d

i n e a c h f i e ld c e n t r e . T h e q u e s t i o n w r i t i n g p a n e l

i n c l u d e d t h e f i e l d c e n t r e s p r i n c i p a l i n v e s t i g a t o r , t h e

m a i n f o c u s g r o u p m o d e r a t o r a n d a t l e a s t o n e p e r s o n

w i t h g o o d i n t e r v i e w i n g s k i l ls a n d e x p e r i e n c e . I n a d -

d i t i o n , a l a y p e r s o n w a s i n c l u d e d t o e n s u r e t h a t

q u e s t i o n s w e r e f r a m e d i n c o m p r e h e n s i b l e a n d n a t u r a l

l a n g u a g e . M a k i n g f u ll u s e o f fo c u s g r o u p t r a n s c r ip t s ,

t h e p a n e l f r a m e d a m a x i m u m o f s ix q u e s ti o n s f o r

e a c h f a c e t , f o l lo w i n g t h e g u i d e l i n e s f o r q u e s t i o n

w r i t i n g o u t l i n e d i n T a b l e 3 .

Q u e s t i o n s f r o m a l l c e n t r e s w e r e t h e n p o o l e d t o

m a k e u p a g l o b a l q u e s t i o n p o o l o f s o m e 1 8 00

q u e s t i o n s . A c o n t e n t a n a l y s i s o f t h e q u e s t i o n s i d e n t -

i f ie d s e v e r a l s e m a n t i c a l l y e q u i v a l e n t q u e s t i o n s

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WHOQOL 1407

T a b l e 3 . C r it e r ia f o r W H O Q O L q u e s t i o n s

Q u e s t i o n s s h o u l d :

- - B e b a s e d a s f a r a s p o s s ib l e o n t h e s u g g e s t i o n s o f p a t i e n t s a n d

h e a l t h p e r s o n n e l p a r t i c i p a t i n g i n th e f o c u s g r o u p s .

~ i v e r is e t o a n sw e r s t h a t ar e i l lu m i n a t i n g a b o u t r e s p o n d e n t s '

qua l i t y o f l i f e , a s de f i ne d i n t h i s p r o j e c t .

- - R e f l e c t t h e m e a n i n g c o n v e y e d i n t h e f a c e t d e fi n i t io n .

~ o v e r , i n c o m b i n a t i o n w i t h o t h e r q u e s t i o n s f o r a g iv e n f a c e t, t h e

ke y a spe c t s o f t ha t f a c e t a s de sc r i be d i n t he f a c e t de f i n i t i on .

- - U s e s i m p l e l a n g u a g e , a v o i d i n g a m b i g u i t y i n t e r m s o f e i t h e r

w o r d i n g o r p h r a s e o l o g y .

- - B e s h o r t e r r a th e r t h a n l o n g e r.

- - A v o i d d o u b l e n e g a t i v e s .

- - B e a m e n a b l e t o a r a t i n g s c al e .

- - A s k a b o u t a s i n g l e i s s u e /f a c e t.

- - A v o i d a n y e x p l i c i t r e f e r e n c e p o i n t e i t h e r i n t e r m s o f t i m e o r i n

t e r m s o f s o m e c o m p a r i s o n p o i n t ( e .g . t h e i d e a l o r b e f o r e I w a s i ll ).- - B e a p p l i c a b l e to i n d i v i d u a l s w i th a r a n g e o f i m p a i r m e n t .

- - B e p h r a s e d a s q u e s t io n s a n d n o t s t a te m e n t s .

- - R e f l e c t t h e t y p o l o g y o f q u e s t i o n s a d o p t e d f o r t h e p r o j e c t .

( e. g . ' H o w m u c h o f t h e t i m e a r e y o u t i r e d ? ' a n d ' H o w

o f t e n a r e y o u t i r e d ? ') , t h u s r e d u c i n g t h e n u m b e r o fq u e s t i o n s i n th e g l o b a l q u e s t io n p o o l . J u d g e m e n t s o f

s e m a n t i c e q u i v a l e n c e w e re c a r r i e d o u t b y c o n s e n s u a l

a g r e e m e n t i n a s m a l l w o r k i n g g r o u p , a n d w e r e su b -

s e q u e n t l y r e v i e w e d b y a l l p r i n c i p a l i n v e s t i g a t o r s .

Q u e s t i o n s w e r e t h e n c a r e f u l l y e x a m i n e d t o s e e t o

w h a t e x t e n t t h e y m e t t h e c r i te r i a f o r W H O Q O L

q u e s t i o n s ( T a b l e 3 ). T h i s l e d to a c o n s i d e r a b l e r e-

d u c t i o n i n t h e n u m b e r o f q u e s t i o n s in t h e g l o b a l p o o l

t o a r o u n d 1 0 0 0 q u e s t i o n s .

T h e p r i n c i p a l i n v e s t i g a t o r i n e a c h o f t h e f i e l d

c e n t re s t h e n r a n k - o r d e r e d t h e q u e s t io n s f o r e a ch f a c e t

a c c o r d i n g t o h o w m u c h i t t e l l s y o u a b o u t a r e s p o n -d e n t s q u a l i t y o f l i fe i n y o u r c u l t u r e . F r o m t h e

c o m b i n e d r a n k i n g s f o r a l l c e n t r e s 23 5 q u e s t i o n s w e r e

s e l ec t ed fo r th e W H O Q O L p i l o t i n s t r u m e n t [ 1 0 ].

T a b l e 4 s h o w s t h e n u m b e r o f q u e s t io n s s e l e c te d f o r

t h e W H O Q O L P i l ot i n s tr u m e n t c o n t r i b u te d b y e ac h

o f t h e f i e ld c e n t r e s .

G enerat ing response sca les . F i v e p o i n t s e m a n t i c

d i f f e r e n t i a l r e s p o n s e s c a l e s a r e u s e d t h r o u g h o u t t h e

W H O Q O L . T h i s i s c o n s i s t e n t w i t h t h e e x te n s iv e us e

T a b l e 4 . N u m b e r o f q u e s t io n s s e le c te d f o r p i l ot W H O Q O L f r o m

e a c h o f t h e m a i n s t u d y f i e ld c e n t r es ( t o t a l n u m b e r o f c o r e q u e s t i o n s235)

N u m b e r a n d p r o p o r t i o n o f q u e s t io n s

i n t h e p i l o t W H O Q O L c o n t r i b u t e d

F i e l d c e n t r e by e a c h f i e ld c e n t r e

B a n g k o k , T h a i l a n d 3 3 ( 1 4 )

B a t h , U . K . 3 1 ( 1 3 )

H a r a r e , Z i m b a b w e 3 3 ( 1 4 )

M a d r a s , I n d i a 4 1 ( 1 7 )

M e l b o u r n e , A u s t r a l i a 4 9 ( 2 1 )

P a n a m a 4 8 ( 2 0 )

P a r i s , F r a n c e 3 6 ( 1 5 )

S t P e t e r s b u r g , R u s s i a 2 2 ( 9 )

S e a t tl e , U . S . A . 4 6 ( 2 0 )

T i l b u r g , N e t h e r l a n d s 5 0 ( 2 1 )

Z a g r e b , C r o a t i a 6 3 ( 2 7 )

Q u e s t i o n s p r o p o s e d b y t h ec o o r d i n a t i n g g r o u p 7 ( 3 )

N o t e : B e c a u s e a s i g n i fi c a n t n u m b e r o f q u e s t i o n s w e r e p r o p o s e d i n

i d e n t ic a l o r s e m a n t i c a l l y e q u i v a l e n t f o r m s t h e s u m o f a l l th e

q u e s t i o n s c o m e s t o m o r e t h a n t h e 2 3 5 q u e s t i o n s i n t h e p i l o t

i n s t ru m e n t . T h e s e v e n q u e s ti o n s p r o p o s e d b y t h e W H O c o o r d i -

n a t i n g g r o u p w e r e p r o p o s e d w h e r e e x i st i n g q u e s t i o n s i n a d e -

q u a t e l y c o v e r e d t h e k e y a r e a s o f t h e f a c e t .

a n d v a l i d a t i o n o f t h i s t y p e o f r e s p o n s e s c a l e w i t h

h e a l t h s t a t u s m e a s u r e s ( s e e R e f . [2 5 ]) . R e s p o n s e s c a l e s

w e r e d e r iv e d f o r e a c h o f th e W H O Q O L ' s l a n g u a g e

v e r s i o n s a c c o r d i n g t o a s t a n d a r d i z e d m e t h o d o l o g y .

A l t h o u g h e n d p o i n t s s u ch a s ' N e v e r ' a n d ' A l w a y s ' a re

u n i v e r sa l , s h a d e s o f m e a n i n g b e t w e e n e n d p o i n t s ( e .g .

' s o m e t i m e s ' ) a r e m o r e a m b i g u o u s , d i ff ic u lt to t r a n s -

l a t e , a n d s u b j e c t t o c u l t u r a l v a r i a t i o n i n t h e i r i n -

t e r p r e t a t i o n . T o e n s u r e e q u i v a l e n c e a c r o s s

W H O Q O L f ie ld c e n tr e s, a m e t h o d o l o g y w a s u s ed

w h i c h s p e c i f i e d t h e a n c h o r p o i n t s f o r e a c h o f t h e f o u r

t y p e s o f 5 - p o i n t r e s p o n s e s c a l e s ( V e r y s a t i s f i e d - V e r y

d i s sa t is f ie d ; N o t a t a l l - E x t r e m e l y ; N o t a t

a l l - C o m p l e t e l y ; a n d N e v e r - A l w a y s ) , a n d a s c a le m e t -

r i c w h i c h i n t e r m e d i a t e d e s c r i p t o r s s h o u l d f i t . T h a t i s

t o s a y d e s c r i p t o r s f o r e a c h o f t h e r e s p o n s e s c a l e s w e r e

d e r i v e d i n e a c h l a n g u a g e t o f i n d w o r d s / t e r m s f a l l i n g

a t 2 5 , 5 0 a n d 7 5 p o i n t s b e t w e e n t h e t w o

a n c h o r s .

T h i s m e t h o d o l o g y e n s u r e d f ir s t t h a t r e s p o n s e s c a le s

w e r e n o t s i m p l y t r a n s l a t e d f r o m a s o u r c e l a n g u a g e ,

w i t h a l l t h e p r o b l e m s a s s o c i a t e d w i t h t h i s p r o c e s s .

S e c o n d , i t s e c u r e d a h i g h d e g r e e o f s c a l a r e q u i v a l e n c e

b e t w e e n l a n g u a g e s , w h i c h w a s s u p p o r t e d b y s u b -

s e q u e n t b i l i n g u a l r e vi ew o f b a c k - t r a n s l a t e d r e s p o n s e

s c a l e d e s c r i p t o r s . T h i r d , i t e n s u r e d e q u i d i s t a n c e b e -

t w e e n d e s c r i p t o r s o n t h e s c a le s . I n l in e w i t h t h e v i e w s

o f r e c e n t c o m m e n t a t o r s [ 26 , 2 7] f u r t h e r f o r m a l t e s t i n g

o f t h e d i m e n s i o n a l e q u i v a l e n c e o f t h e s e s c a l e s i n t h e

d i f f e r e n t c u l t u r e s i s n e e d e d , a n d i s p l a n n e d a s p a r t o f

t h e W H O Q O L ' s f ie ld t e s ti n g .

( 3) P i lo t t e s t

T h e W H O Q O L p i lo t i n s tr u m e n t c o n t ai n e d 2 35

c o r e q u e s t i o n s a d d r e s s i n g 2 9 f a c e t s o f q u a l i t y o f l if e .

I n a d d i t i o n , s e v e r a l q u e s t i o n s w e r e c o n c e r n e d w i t h

o v e r a l l q u a l i t y o f l if e a n d h e a l t h p e r c e p t i o n s . T h e

p i l o t i n s t r u m e n t w a s s t a n d a r d i z e d i n t e r m s o f f o r m a t ,

i n s t r u c t i o n s , q u e s t i o n s a n d a d m i n i s t r a t i o n .

T h e p i l o t te s t in g i n v o l v e d t h e a d m i n i s t r a t i o n o f t h e

i n s t r u m e n t t o s o m e 2 5 0 h e a l t h c a r e u s e r s a n d 5 0

h e a l t h y r e s p o n d e n t s i n 15 c u l t u r a l l y d i v e r s e fi e ld

c e n t r e s ( T o t a l N = 4 5 0 0) . T h e a n a l y s i s p l a n a i m e d t o :

( 1 ) e x a m i n e t h e c o n s t r u c t v a l i d i t y o f t h e W H O -

Q O L d o m a i n s a n d f a c e t s ;

( 2 ) s e l e c t t h e b e s t q u e s t i o n s f o r e a c h f a c e t ; a n d

( 3 ) e s t a b l is h t h e W H O Q O L ' s r e l i ab i l i ty ( i n te r n a l

c o n s i s t e n c y ) a n d d i s c r i m i n a n t v a l i d i t y .

A t t h e t i m e o f w r i t i n g , t h e p i l o t i n g h a s b e e n

c o m p l e t e d . S e v e r a l p u b l i c a t i o n s a r e i n p r e p a r a t i o n

r e p o r ti n g th i s w o r k . T h e W H O Q O L F i e ld T ri a l

F o r m h a s b e e n f i n a l i z e d , a n d f i e l d t e s t i n g s t a r t e d .

( 4) F ie ld te s t

T h e f o u r t h s t a g e o f w o r k , f i e l d t e s t i n g , a i m s t o

e s t a b l i s h t h e i n s t r u m e n t ' s s e n s i t i v it y t o c h a n g e ,

t e s t - r e t e s t r e l i a b i l i t y , a n d c r i t e r i o n v a l i d i t y , s p e ci f i-

c a l l y w i t h r e g a r d t o c o n v e r g e n t , d i s c r i m i n a n t a n d

p r e d ic t iv e v al id i ty . T h e W H O Q O L F i e ld T r ia l F o r m

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1408 T he W HO QO L Grou p

i s a 1 0 0 - q u e s ti o n m e a s u r e p r o d u c i n g s ix d o m a i n

s c o r e s a n d 2 4 f a c e t s c o r e s . I t i n c l u d e s f o u r g l o b a l

q u e s t i o n s e n q u i r i n g i n t o o v e r a l l q u a l i t y o f l i f e a n d

g e n e r a l h e a l t h .

A s e r i e s o f l o n g i t u d i n a l s t u d i e s i s i n p r o g r e s s

i n v o l v i n g s p e c if i c p o p u l a t i o n s ( i n c l u d i n g t h o s e w i t h

v i s u a l i m p a i r m e n t s , d e p r e s s i o n , r h e u m a t o i d a r t h r i ti s ,

d i a b e t e s ) , s p e c i f ic i n t e r v e n t i o n s ( i n c l u d i n g c a t a r a c t

o p e r a t i o n s , v a r i o u s m e d i c a t io n s , p s y c h o l o g i c a l in t e r -

v e n t i o n s ) a n d t h e p a r a l l e l u s e o f o t h e r n a t i o n a l a n d

i n t e r n a t i o n a l i n s t r u m e n t s w i t h e s t a b l is h e d p s y c h o -

m e t r i c p r o p e r t i e s . S e v e r a l s t u d i e s a r e a l s o p l a n n e d t o

l o o k a t t h e W H O Q O L s s e n si ti v it y t o c h a ng e t h r o u g h

d i s e a s e s t a g e s (e .g . A I D S ) , s o c i o - d e v e i o p m e n t p r o -

g r a m m e s ( e .g . h o u s i n g p r o g r a m m e s ) , a n d v a r i o u s l if e

c h a n g e s ( e . g . p r e g n a n c y a n d c h i l d b i r t h ; o l d e r a d u l t s

e n t e r in g n u r s i n g h o m e s ) .

O n c e t h e f i e l d t e s t is c o n c l u d e d t h e i n s t r u m e n t w i l l

b e r e v i e w e d t o o v e r c o m e a n y d i f f i c u lt i e s t h a t h a v e

b e c o m e a p p a r e n t .

FURTHER WORK ON WHOQOL DEVELOPMENT

F u r t h e r l a n g u a g e f o r m s o f t h e W H O Q O L a r e

c u r r e n t l y i n d e v e l o p m e n t . N e w l a n g u a g e f o r m s a r e

d e v e l o p e d t h r o u g h a p r o c e s s o f f o c u s g r o u p w o r k ,

p i l o t t e s t i n g a n d f i e l d t e s t i n g t h a t r e p l i c a t e s t h e

m e t h o d u s e d t o d e v e l o p e x is t in g l a n g u a g e v e r s i o n s . A

p r o t o c o l t h a t d e s c r i b e s t h e p r o c e d u r e s t o b e f o l l o w e d

i n d e t a i l h a s b e e n d e v e l o p e d .

S e v er a l a d d - o n m o d u l e s f o r t h e W H O Q O L a r e

p l a n n e d f o r a s s e s s in g t h e q u a l i t y o f l if e o f p e o p l e w i t h

a p a r t i c u l a r d i s e a s e , o r i n c i r c u m s t a n c e s i n w h i c h t h e

c o r e m o d u l e d o e s n o t p r o v i d e s u f f ic ie n t d e t a i l. W H O

h a s i d e n ti f ie d f iv e p r i o r i t y a r e a s f o r m o d u l e d e v e l o p -

m e n t :

( a ) p e r s o n s s u f f e r i n g f r o m c h r o n i c d i s e a s e s ( e . g .

e p i l e p s y , a r t h r i t i s , c a n c e r , A I D S , d i a b e t e s ) ;

( b ) c a r e g i v e r s o f t h e i l l o r d i s a b l e d ( e . g . a p e r s o n

t a k i n g c a r e o f a t e r m i n a l l y s i c k p a t i e n t ) ;

( c ) p e r s o n s l i v i n g i n h i g h l y s t r e s s f u l s i t u a t i o n s ( e .g .

e l d e r l y p e o p l e l i v i n g i n p o o r l y r u n i n s t i t u t i o n s ,r e f u g e e s i n c a m p s ) ;

( d ) p e r s o n s w i t h d i f f ic u l t y c o m m u n i c a t i n g ( e .g .

p e r s o n s w i t h s e v e r e l e a r n i n g d i s a b i l i ti e s ) ; a n d

(e ) ch i l d ren .

T h e m e t h o d o l o g y f o r t h e d e v e l o p m e n t o f m o d u l e s

i s d e t a i l e d e l s e w h e r e [9 ], b u t i n c l u d e s t h e s a m e i t e r a -

t iv e p r o c e s s o f i n p u t f r o m h e a l t h p r o f e s s i o n a l s a n d

q u a l i t y o f l if e r e s e a r ch e r s f r o m a r o u n d t h e w o r l d ,

c r o s s - c u l t u r a l l a y r ev i e w ( th r o u g h f o c u s g r o u p s ) , a n d

i n t e r n a t i o n a l e x p e r t r e v i e w . T h e m e t h o d o l o g y a l s o

s t a te s t h a t a n y m o d u l e s h o u l d b e d e v e l o p e d s i m u l -

t a n e o u s l y i n a t l e a s t t h r e e c u l t u r a l l y d i v e r s e c e n t r e s .

A s w e l l a s t h e c o m p r e h e n s i v e W H O Q O L a s s e s s -

m e n t , a s h o r t v e r s i o n i s p l a n n e d f o r u s e i n r e s e a r c h

r e q u i r i n g r e p e a t e d m e a s u r e s , i n c l i n i c a l s e t t i n g s a n d

f o r r e s p o n d e n t s w i t h d i f f ic u l ty c o m p l e t i n g t h e l o n g

v e r s io n . I n t e r v i e w e r a s s i s t e d a n d i n t e rv i e w e r a d m i n i s -

t e r e d f o r m s a r e p l a n n e d f o r r e s p o n d e n t s w h o c a n n o t

r e a d o r w r i t e ( f o r c u l t u r a l , e d u c a t i o n a l o r h e a l t h

r e a s o n s ) . R e s e a r c h u s i n g a m u l t i - t ra i t , m u l t i - m e t h o d

a p p r o a c h [ 2 8 ] w i l l b e c o n d u c t e d t o e s t a b l is h t h e

c o r r e s p o n d e n c e a m o n g t h e s e d i f f e r e n t f o r m s o f t h e

W H O Q O L .

SUMM RY ND CONCLUSIONS

T h i s p a p e r o u t l in e s t h e d e v e l o p m e n t o f th e W H O -

Q O L , a m u l t i - l i n g u a l a s s e s s m e n t o f q u a l i t y o f li fe .

D i f fe r en t la n g u a g e f or m s o f t h e W H O Q O L a r e di -

r e ct ly c o m p a r a b l e . T h e W H O Q O L p r o d u c e s a p ro f il e

o f s c o r e s a c r o s s s ix b r o a d d o m a i n s o f q u a l i t y o f l if e

a n d s o m e 2 4 f a c e t s o f q u a l i t y o f l i f e .

T h e W H O i n i ti a t iv e t o d e v e l o p a q u a l i t y o f li fe

a s s e s s m e n t i n s t r u m e n t i s l i n k e d t o o t h e r i m p o r t a n t

W H O p r o je c ts . W H O h a s p r oj e c ts c u rr e n tl y u n d e rw a y o n t h e i n t e r n a t i o n a l e v a l u a t i o n o f d i f fe r e n t t r e a t -

m e n t s , t h e d e v e l o p m e n t a n d i m p r o v e m e n t o f t h e

W H O s c h e m e o f i m p a i r m e n t s , d i s a b i li t ie s a n d h a n d -

i c a p s a n d t h e d e v e l o p m e n t o f n a t i o n a l g u i d el i n es f o r

q u a l i t y a s s u r a n c e i n h e a l t h c a r e . T h e W H O Q O L

p r o j e c t , t h e r e f o r e , i s a p a r t o f l a r g e r d r i v e t o w a r d s

H e a l t h f o r A l l , a n d t h e p r o m o t i o n o f m e n t a l , s o c i al

a n d p h y s i c a l w e l l - b e i n g .

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7. Bullinger M. E nsuring international equivalence ofqual i ty of l ife measures: problems and approaches tosolution. In Quality of Life Assessment: InternationalPerspectives (Edi ted by Orley J . and Kuyken W.) .Springer-Verlag, Heidelberg, 1994.

8. Sar tor ius N. and Kuyken W. Transla t ion of hea l thstatus instruments. In Quality o f Life Assessment: Inter-national Perspectives (Edi ted by Orley J . and Kuyken

W.). Springer Verlag, Heidelberg, 1994.9. World Health Organization. W H O Q O L S tu d y P r o to -col. (MNH/PSF/93.9), WHO, 1993.

I0 . T he WH OQ OL G roup . Deve lopm ent o f t he W HO-QO L: ratio nale and current status. In t . J . Menta l Hl th23, 24, 1994.

I 1 . The W HO QO L Gro up. The development of the W orldHe alth Organization quali ty o f life assessment i n s t ru

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s u rv e y q u e s t io n n a i re . Quality Life Res. 2 169, 1993.

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S ic k n e ss Imp a c t P rof il e: d e v e lo p me n t a n d f in a l r e v i s io n

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Focus Group Work. M N H / P S F / 9 3 . 4 . W H O , G e n e v a ,1993.

2 3 . P a t r i c k D . L . a n d B e rg n e r M. M e a s u re m e n t o f h e a l th

s ta tus in the 1990 s . A. Rev. Pub Hhh 11, 165 , 1990.

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Geneva , 1992 .2 5 . Wa re J . E . , S n o w K . K . , K o s in s k i M. a n d G a n d e k B .

SF -3 6 Health Survey: M anua l and Interpretation Guide.N e w E n g la n d M e d ic a l C e n te r , M A , U . S . A . , 1 9 93 .

26 . Dress ie r W. W . , Vi te r i F . E . , Cha vez A. , Gree l G. A. C.

a n d D o s S a n to s J . E . C o mp a ra t iv e r e s e a rc h in s o c ia le p id e mio lo g y : me a s u re m e n t i ss ue s. Ethnicity Dis. 1 , 3 7 9 ,1991.

2 7 . R e i s e S . P . , W id a m a n K . F . a n d P u g h R . H . C o n f i rma -to ry f a c to r a n a ly s i s a n d i t e m re s p o n s e th e o ry : tw o

a p p ro a c h e s fo r e x p lo r in g me a s u re me n t in v a r i a n c e . Psy-chol. Bull. 114, 552, 1993.

2 8 . C a m p b e l l D . T . a n d F i s k e D . W. C o n v e rg e n t a n d

d i s c r i m i n a n t v a l i d a ti o n b y t h e m u l t i - t ra i t - m u l t i - m e t h o dma t r ix . Psychol. Bull. 56, 81, 1959.

A P P E N D I X

Example W H O Q O L Facet Def in i tion

Spirituality~religion/personal belief~

T h is f a c e t e x a min e s th e p e r s o n s p e r s o n a l b e l ie f s a n d h o w

th e s e a ff e c t h i s q u a l i ty o f l if e. T h i s m ig h t b e b y h e lp in g th eperso n cope with d if f icu lt ie s in the ir l i fe, g iv ing s t ruc tu re to

th e i r e x p e ri e n c e , a s c r ib in g me a n in g to s p i r i t u a l a n d p e r s o n a lq u e s t io n s , a n d mo re g e n e ra l ly p ro v id in g th e p e r s o n w i th a

sense o f we l l -be ing . Th is face t addresses peop le with d if fe r-ing re l ig ious be l ie fs (e .g . Buddhis ts , Chris t ians , Hindus ,Mu s l ims ) , a s w e l l a s p e o p le w i th p e r s o n a l a n d s p i r i t u a lb e l i e f s t h a t d o n o t f i t w i th in a p a r t i c u la r r e l ig io u s o r i e n -

t a t io n . F o r m a n y p e o p le r e l ig io n , p e r s o n a l b e li e f s a n d

s p i r i t u a l i t y a re a s o u rc e o f c o mfo r t , w e l l -b e in g , s e c u r i ty ,me a n in g , s e n s e o f b e lo n g in g , p u rp o s e a n d s t r e n g th . H o w -ever , some people fee l tha t re l ig ion has a nega t ive in f luence

o n th e i r l if e. Q u e s t io n s a re f r a me d to a l lo w th i s a s p e c t o f t h eface t to emerge .

Examples: Mu s l ims l iv in g in a H in d u a re a ; a p e r s o n w i tha terminal illness .


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