The Challenge of Cross-Cultural Quality of Life Assessment

1. The Challenge of Cross-Cultural Quality of Life Assessment Monika Bullinger, Silke Schmidt Institute of Medical Psychology University of Hamburg

2. Background Interest in Health-Related Quality of Life as • descriptor of functioning and well-being of populations with and without medical conditions (epidemiological perspective) • outcome criterion for interventions (clinical perspective) • an aid for decision making in the health care field (political perspective)

3. Meanings of the term international • political: nation • geographical: country • anthropological: culture • sociological: society • psychological: identity language

4. Demands Measures of Quality of Life should be sensitive to • language and dialect • customs, beliefs and traditions • education and socioeconomic status Nat. Cancer Institute 1992

5. Essential questions • Is Quality of Life a relevant concept in a given nation/ culture? • Do nations/cultural groups share an identical set of concepts about Quality of Life? • Can Quality of Life concepts be assessed with instruments? • Is Quality of Life measurable across nations/cultures with the same instrument? • Can Quality of Life data be compared across nations/ cultures? • Do cross-cultural Quality of Life results provide a sound basis for decision making?

6. Problems • Ethnocentrism? • Normativity of concept? • Bias in assessment? • Ethical consequences?

7. Statement "Although some researchers may desire a scale or similar instruments for global assessments of cultures, permitting comparison of the "nature" of one culture with another (...), no such scale exists. In fact, given the multiplicity of variables or domains comprising a culture, that goal is unrealistic, both theoretically and methodologically." T. M. Johnson in Spilker 1996, p. 511

8. Criteria • functional equivalence adequacy of translation • scale equivalence comparability of response scales • operational equivalence standardization of psychometric testing • metric equivalence order of scale values along criterion Hui & Triandis 1985

9. Approaches to cross-cultural instrument development • sequential approach (transfering an existing questionnaire to another culture, e.g. SF-36 Health Survey) • parallel approach (assembling an instrument based on existing scales from different cultures, e.g. EORTC QLQC30) • simultaneous approach (cooperative cross-cultural development of a questionnaire, e.g. WHO-QOL)

10. Steps in instrument development • Item development (focus groups; expert pannel; cognitive debriefing)... • Translation (foreward, backward, piloting) • Psychometric testing (reliability, validity, responsiveness) • Norming (representative population sample, weighing)

11. Focus Groups • Can help to identify relevant concepts • Involve of potential respondents and/or experts • can be active in dimension/facet/item generation

12. Cognitive Debriefing • Is used to examine the concepts/dimensions/items from the respondent perspective • Can be performed individually or in the group • Should use standard format of presentation, discussion and documentation

13. Question writing Questions should: • be based as far as possible on evaluation of questions already in use in the countries or on the suggestions of experts and lay-people participating in the focus groups; • give rise to answers that are enlightening about the concepts to be measured; • reflect the meaning conveyed in the definition of the indicator and its domains/facets; • cover, in combination with other questions for a given indicator, the key aspects of that as described in the definition

14. Questions should... • use simple language, avoiding ambiguity in terms of either wording or phraseology; • be shorter rather than longer; • avoid double negatives; • be amenable to a rating scale; • ask about a single issue/facet; • be applicable to individuals with a range of health status; • be phrased as questions and not statements; • reflect the typology of questions adopted for the project

15. The Translation Process Quality backward 2 Raters Quality foreward 2 Raters Difficulty 2 Raters Target Original Original 2 Translaters 2 Translaters Comparison

16. Testing Response Scales • Can be used to assess the conceptual equivalence of response scales • Helps to examine the interval properties of response scales within and across cultures • can be performed using visual-analogue (e.g. “none-all of the time”) scales as anchors with responses to be set between these (e.g. “sometimes”) • Ensures cross-cultural comparability of instruments

17. Cross- cultural psychometric testing • Data sets: • national, combined national, global • Methods: • classical psychometrics (e.g. Cronbachs Alpha), • structural equation modelling (e.g. EQS), • modern approaches (e.g. Item Response Theory) • Desired Product: • a cross-culturally usable and interpretable measure

18. Internationally active groupsQuality of Life working groups • The Nottingham Health Profile (NHP) Group • The European Organization for Research and Treatment of Cancer (EORTC) Group • The International Quality of Life Assessment Project Group (IQOLA: SF-36) • The Sickness Impact Profile (SIP) Group • The World Health Organization Quality of Life (WHO-QOL) Group • The European Quality of Life Project (EUROQOL) Group • The Functional Assessment of Cancer Treatment (FACT) Group

19. IQOLA Project Phases • translation --> survey form • scale construction --> scoring algorithms • validation and norming --> interpretation • publication of results --> user friendly guidelines

20. IQOLA Project • Prototype project for sequential approach (SF-36 Health Survey) • Was the first project to develop standards for cross-cultural QOL research • Translated and tested the SF-36 Health Survey in 15 (Phase 1) countries • Representative (norm) data available in most western European countries

21. Results from the IQOLA project • The psychometric properties of the questionnaire are acceptable in each culture. • In norming studies, the scale scores of SF-36 scores do differ. • There is considerable overlap between western countries in the dimensional structure of the SF-36.

22. WHO QOL Project • Prototype project for simultaneous approach (WHOQOL) • Generated the items within each country (focus groups) • Reduced items empirically in a field study • Tested performance of WHO QOL-100 (-BREF) in several studies.

23. Results from the WHOQOL project • The items constructed by different cultures are comparable. • National items do not contribute significantly to the instrument's quality. • Structural equation modelling does not show substantial difference in the relationships of dimensions across cultures.

24. Cross-cultural Quality of Life Assessment • Conceptual level: • Representation and operationalisation of the concept • Methodological level: • Type and appropriateness of assessment • Application level • Practical considerations and feasibility in cross-cultural settings, • Policy level • Ethical considerations and interpretability of cross-cultural data sets

25. Cross-cultural Quality of Life Assessment (Examples) • Adults: IQOLA-Project (SF-36) WHO QoL-Project (WHOQOL) EUROHIS WHOQOL OLD • Children: DISABKIDS-Project HaemoQol-Project ESCH-QoL-Project KIDSCREEN- Project

27. WHOQOL-OLD- Cross-cultural structural testing (pilot)

28. EUROHIS-QOL 8 item index for different countries

29. · Differential item functioning analyses of the 8 items of the EUROHIS - - EUROHIS - QOL 8 item index Country Gender Age group Condition 2 2 2 2 R - diff RUMM R - diff RUMM R - diff RUMM R - diff RUMM 1 .005 .000 .003 .121 .002 .592 .001 .078 How would you rate your quality of life 2 .012 .000 .001 .186 .017 .000 .020 .034 How satisfie d are you with your health 3 .008 .076 .003 .954 .004 .065 .003 .288 Do you have enough energy for everyday life 4 .016 .000 .002 .272 .009 .853 .003 .234 How satisfied are you with your ability to perform you r daily activities 5 .027 .000 How satisfied are you with yourself .001 .647 .006 .039 .003 .596 6 .010 .072 .003 .335 .003 .048 .0 06 .082 How satisfied are you with your personal relationships 7 .027 .000 .001 .013 .015 .005 .006 .102 Have you enough money to meet your needs 8 .014 .000 .004 .919 .027 .977 .010 .078 How satisfied are you with the conditions of your living place

30. Summary • International efforts to assess Quality of Life cross-culturally exist. • Many instruments need to be reviewed for their cross-cultural performance. • First results suggest a cross-cultural applicability of instruments. Considerations in Qol research in developing countries • value to all collaborating parties • compatibility with ressources/energies • compliance with ethical and moral standards of collaborators/subjects

31. Ethics in cross-cultural Quality of Life research • transparency of underlying concepts • modesty in using specific measurement approaches • correctness in applying instruments and analyzing data • responsibility for the results also after their publication

32. Conclusions • Quality of life seems to be a universal human concept as concerns its relevant dimensions. • Different individual behaviors, societal conditions and cultural regulations may apply, but these concern the means rather than the results of pursuing well-being. • Although cultures do differ in the basic conditions provided to strive at a favorable Quality of Life, the person's subjective perception is not a linear reflection of these conditions.

33. Future Provided that the Quality of Life of citizens is a mayor concern in the given country, Quality of Life data • may give information about the respective status of populations, • may thus suggest plans to improve the Quality of Life status of populations by specific interventions, • can be used to measure the effects of such interventions • and can contribute to minimizing the gap between the "developed" and the "developing" world.