Jan L. Bernheim 1,2,3 , Peter Theuns 4 , Piet Calcoen 3 ,

1. BRIDGING CULTURAL RELATIVITY IN QOL ASSESSMENT BY ANAMNESTIC COMPARATIVE SELF ASSESSMENT (ACSA) Jan L. Bernheim1,2,3, Peter Theuns4, Piet Calcoen3, Mehrdad Mazaheri4,Francis Heylighen2, Matthias Rose5 Depts of 1Human Ecology and End-of-Life Care Research Group, 2 Leo Apostel Centre for Interdisciplinary Studies, 3 Centre for Bioethics, 4 Psychology, Vrije Universiteit Brussel, Belgium, 5 Dept. of Psychosomatics, Charité-Humboldt University, Berlin, Germany jan.bernheim@vub.ac.be NB. Please view via ‘Notes page’. You can then progress through the document using your mouse wheel, Page Down key, or the double-headed arrow to the right of this frame.

2. Much of the material of this presentation is in press as: • J. L. Bernheim, P. Theuns, J. Hofmans, M. Mazaheri,F. Heylighen, M. Rose. • The potential of Anamnestic Comparative Self Assessment (ACSA) to reduce bias in the measurement of Subjective Well-Being. • J. of Happiness Studies, 2005

3. A tall order:Measuring subjective wellbeing (SWB), the perception of Quality of Life (QOL)is Quantifying what is qualitativeMaking objective what is subjective

4. WHAT FOR ? • To calculate • Quality Adjusted Life Years (QALYs) • Happiness Adjusted Life Years (HALYs) • As input and outcome measures for • Policies: health, social, economic, ... • Research

5. PURPOSES OF THIS PRESENTATION • I. Discussion of some problems & biases in the measurement of SWB • II. Presentation of ACSA, a personalised alternative instrument to the conventional global question (CQ) on SWB • III. Results of large-scale empirical comparison of ACSA and CQ

6. Taxonomy of Quality-of-Life measures

7. Why are multiple item instruments more descriptive than evaluative, and are single-item (global) ratings necessary? • Multidimensional questionnaires always incomplete • Individual people have different preferences, which moreover change over time (Response Shifts, see: Schwartz, C.E. and Sprangers, M.A.G.: 2000, ‘Adaptation to changing health: Response shift in quality-of-life research’, (Washington, DC: American Psychological Association).) • Dimensions of QoL not independent, but interacting (life = complex, therefore SWB = at emergent level) Bernheim, J.L.: 1999, ‘How to get serious answers to the serious question: How have you been?: subjective quality of life (QOL) as an individual experiential emergent construct’, Bioethics 13, pp. 272-287.

8. Conventional Question (CQ) Biographical Question (ACSA) Which global question is better suited for what? OR

9. Examples of sequential ACSA ratings during illness (from: Bernheim, J.L., and M. Buyse: 1984, ‘The Anamnestic Comparative Self Assessment for measuring the subjective quality of life of cancer patients’, J. Psychosoc. Oncol. 1, pp. 25‑38.) • All scale-points used • Some scores beyond scale • (Retrospective) Baseline rating usually within (high) mode of CQ ratings in healthy subjects in affluent countries

10. LABEL CQ: Conventional Question Anamnestic (based on memory) Comparative Self Assessment CONTENT “How have you been?” “How have you been, relative to your best and your worst times?” Reminder of Terminology and Definitions

11. Problems with the conventional global question (CQ) on QOL • Trivialisation of response(“How are you today?”)  random or socially desirable responses • Proximate / peer relativity(~the neighbours) tendency to normal distribution • Cultural bias(Veenhoven, Lau & Cummins, Diener, e.g. Diener, E., & Diener, M.: 1995, ‘Cross-cultural correlates of life satisfaction and self-esteem’, Journal of Personality and Social Psychology, 68, 653-663.), possibly related to • Personality traits (Steel, P. and Ones, D.S.: 2002, ‘Personality and happiness: a national-level analysis.’, Journal of Personality and Social Psychology 83, pp 767-781)

12. Frequency Distribution for Subjective Wellbeing (Western vs Asian) A. Lau & R. Cummins 2004 QOL Research 13: 1496,2004 0 10 20 30 40 50 60 70 80 90 100 Percentage of Scale Maximum (%SM) Population Mean (Asian) Population Mean (Western)

13. SATISFACTION WITH LIFE AS A WHOLEA. Lau & R. Cummins, QOL Research 13: 1496,2004 *

14. QUESTION: HK-AUS difference real, or cultural, different peoples using other scales? • A. Lau & R. Cummins, QOL Research13: 1496 , 2004

15. Identifying a cultural response bias A. Lau & R. Cummins QOL Research 13: 1496,2004 “Can you recall feeling really bad / really goodsometime in your life ?” “On the scale from 0 to 10, how would you have rated yourself at these times ?”

16. RESULTA. Lau & R. Cummins, QOL Research 13: 1496, 2004 “How satisfied when …..?”

17. CONCLUSIONS ofA. Lau & R. Cummins, QOL Research 13: 1496, 2004 • Chinese use a narrower range of the scale than Australians: they admit to less happiness or misery. • Part of the apparent deficit in life satisfaction among Chinese is an artifact by cultural bias in the utilisation of scale of SWB.

18. Aims of our own Study Compare ACSA and CQ for Sensitivity to socio-demographic variables Discriminating power Responsiveness: sensitivity to objective evolution (J. L. Bernheim, P. Theuns, J. Hofmans, M. Mazaheri,F. Heylighen, M. Rose. The potential of Anamnestic Comparative Self Assessment (ACSA) to reduce bias in the measurement of Subjective Well-Being. J. of Happiness Studies, in press, 2005)

19. Methods

20. METHODS n=2545 general hospital patients replied to both CQ and ACSA, administered as written questionnaires

21. ResultsI.Discrimination II. Sensitivity to objective change

22. Discrimination (inter-group comparisons)& Sensitivity to objective change (after life- and QOL-saving transplantation in End-Stage-Liver Disease )(CQ and ACSA ratings +/- SD normalised to 0-10 scale)

23. ResultsIII. Sensitivity to socio-demographic variables

24. Structural Equation Model for surveyed socio-demographical variables to predict Qol

25. Sensitivity to socio-demographic variables

26. OBSERVATIONS ACSA more discriminating ACSA more sensitive to objective changes ACSA minimally sensitive to ‘fixed’ socio-demographic variables such as gender & age and possibly less to personality traits POSSIBLE EXPLANATIONS Less randomness by serious or even solemn question, concrete and individually pertinent scale anchors, Respondent = his own control ACSA self-anchored: internal standard with personal biographical references Respondent = his own control Conclusions and discussion on ACSA vs CQ comparison

27. Cultural gaps bridged by ACSA? • Hypothesis: If Asians and Europeans are asked to use ACSA’s biographical scale anchors, this may normalise their QOL scales. Thus, we could dispense with the need for ‘cultural correction factors’ when comparing QOL in different cultures. • Future research: more intercultural comparisons, further study of scale properties.

28. Does taking a face-to-face ACSA interview qualify as “Deep Listening”? • In clinical practice, ACSA opened a broad area of communication between patient and caregiver • Respondents’s appreciation: (control study by clinical psychologists): high: 60 % moderate: 22% low: 18 % (Souris, M., Ledure, G. and Bernheim, J.L .: 1983, ‘L'auto‑évaluation anamnestique comparative (ACSA). III. Fiabilité de la méthode et tolérance des malades cancéreux’, Psychologie médicale 15, pp. 1625‑1626.)

29. Future Research on putative universal applicabiliity of ACSA Problem: people have objectively different life circumstances characterising their ACSA scale anchors (e.g. Switzerland vs Rwanda or Cambodja) ACSA would be universal only on condition that: • self-defined biographical extreme scale anchors would represent the (individually specific) saturation levels of happiness and misery, and • every adult would (if only for short times) have lived through (an) extreme(s) saturating their capacity for perception of happiness and misery • Research question: Are happiness/unhappiness, like all receptor-mediated perceptions, saturable?

30. Some References • Bernheim, J.L.: 1983, ‘L'auto‑évaluation anamnestique comparative (ACSA).I. Description d'une méthode de mesure de la qualité subjective de la vie des malades cancéreux’, Psychologie médicale 15, pp. 1625‑1626. • Bernheim, J.L.: 1999, ‘How to get serious answers to the serious question: How have you been?: subjective quality of life (QOL) as an individual experiential emergent construct’, Bioethics 13, pp. 272-287. • Bernheim, J.L., and M. Buyse: 1984, ‘The Anamnestic Comparative Self Assessment for measuring the subjective quality of life of cancer patients’, J. Psychosoc. Oncol. 1, pp. 25‑38. • Buyse, M., J.L. Bernheim and N. Rotmensz: 1983, ‘L'autoévaluation anamnestique comparative (ACSA). II. Résultats d'une étude pilote portant sur 65 patients cancéreux’, Psychologie médicale 15, pp. 1623‑1624. • Cummins, R.A.: 1996, ‘The Domains of Life Satisfaction: An Attempt to order Chaos’, Social Indicators Research 38, pp. 303-328. • Diener, E., & Diener, M.: 1995, ‘Cross-cultural correlates of life satisfaction and self-esteem’, Journal of Personality and Social Psychology, 68, 653-663. • Inglehart, R.: 2004, World Values Survey. http://www.worldvaluessurvey.org/news/index.html • Ouweneel P. and R. Veenhoven: 1991, ‘Cross-National Differences in Happiness: Cultural Bias or Societal Quality?’ in BleichrodtN & Drenth, P.J. (eds), Contemporary issues in cross-cultural psychology (Swets & Zeitlinger, Amsterdam), pp.[JH1]. • Schwartz, C.E. and Sprangers, M.A.G.: 2000, ‘Adaptation to changing health: Response shift in quality-of-life research’, (Washington, DC: American Psychological Association • Souris, M., Ledure, G. and Bernheim, J.L .: 1983, ‘L'auto‑évaluation anamnestique comparative (ACSA). III. Fiabilité de la méthode et tolérance des malades cancéreux’, Psychologie médicale 15, pp. 1625‑1626 • Steel, P. and Ones, D.S.: 2002, ‘Personality and happiness: a national-level analysis.’, Journal of Personality and Social Psychology 83, pp 767-781 • Veenhoven, R.: 2005, World Database of Happiness. http://www.eur.nl/fsw/research/happiness • ). • . • .