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

BRIDGING CULTURAL RELATIVITY IN QOL ASSESSMENT BY ANAMNESTIC COMPARATIVE SELF ASSESSMENT

(ACSA)

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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

A tall order:

Measuring subjective wellbeing (SWB), the perception of Quality of

Life (QOL)

is

Quantifying what is qualitativeMaking objective what is subjective

WHAT FOR ?

To calculateQuality Adjusted Life Years (QALYs)Happiness Adjusted Life Years (HALYs)

As input and outcome measures for Policies: health, social, economic, ... Research

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

Taxonomy of Quality-of-Life measures

Quality-of- Lifemeasures

Objective Subjective

MultidimensionalGlobal, Single item

Object of this study

ConventionalQuestion (CQ)

OR Anamn. Comp.

Self Assessm. (ACSA)

Multidimensional Global, Single item

Human Development Index, … indicators:

•Longevity•Literacy

•Child mortality• …

E.g. Performance Status

(Karnofsky index)

E.g. •SF36,

•WHOQOL•PWI

•Seiqol,…

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.

Which global question is better suited for what?

I am ...

... with lifeas a whole

very satisfied

neither/nor

satisfied

unsatisfied

very unsatisfied

5

4

3

2

1

I am ...

... with lifeas a whole

very satisfied

neither/nor

satisfied

unsatisfied

very unsatisfied

5

4

3

2

1

very satisfied

neither/nor

satisfied

unsatisfied

very unsatisfied

5

4

3

2

1

Conventional Question

(CQ)On this scale I rate the current period as …

best period

worst period-5

+5

0

… in my life

On this scale I rate the current period as …

best period

worst period-5

+5

0

… in my life

Biographical Question (ACSA)

OR

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.)

-7

-5

-3

-1

1

3

5

-7

-5

-3

-1

1

3

5

-7

-5

-3

-1

1

3

5

-9-7-5-3-1135

All scale-points used Some scores beyond scale (Retrospective) Baseline rating usually within (high) mode of CQ ratings in healthy

subjects in affluent countries

Reminder of Terminology and Definitions

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?”

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)

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

(Western)

Population Mean

(Asian)

SATISFACTION WITH LIFE AS A WHOLE

A. Lau & R. Cummins, QOL Research 13: 1496, 2004

55

60

65

70

75

80

Hong Kong Australia

LIFE AS A WHOLE

% SM(Actual Value)

*

QUESTION: HK-AUS difference real,

or cultural, different peoples using other

scales? A. Lau & R. Cummins, QOL Research 13: 1496 , 2004

Identifying a cultural response biasA. Lau & R. Cummins QOL Research 13: 1496, 2004

“Can you recall feeling really bad / really good sometime in your life ?”

“On the scale from 0 to 10, how would you have rated yourself at these times ?”

RESULT A. Lau & R. Cummins, QOL Research 13: 1496, 2004

20

30

40

50

60

70

80

90

100

Feeling VeryBad

Feeling VeryGood

% SM (Actual Value)

Oz

HK

“ How satisfied when …..?”

CONCLUSIONS of A. 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.

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)

Methods

METHODS

Eating Dis. n=305

Post-traumatic Stress Disorder n=283

Anxiety n=281

Affective Disorders n=308

Somatisation Disorders n=685

Dependency n=128

Circulatory system. n=112

Metabolic Disorders n= 96

End-Stage Liver Dis. (pre transplantation) End-Stage Liver Dis. (post transplantation)

n=100 n=171

Total n=2545

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

ResultsI. Discrimination

II. Sensitivity to objective change

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)

0

2

4

6

8

10

12

Ea

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is.

Po

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Str

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Dia

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)

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d-S

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. (P

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)

To

tal

ACSA

CQ

Results III. Sensitivity to socio-demographic variables

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

Age

Sex

Nationality

Marital Status

Living with Partner

Number of Children

Number in Houshold

Education Level

Employment

QOL

a

1

Sensitivity to socio-demographic variables

Variables

Beta coefficients

Conventional Question

ACSA

Age .209** .014

Sex (M=1 / F=0) .043* .012

Marital status (single or married=1/ widowed or divorced=0) .119** .004

Highest graduation ( grammar school or higher=1 / lower=0)

.015 .007

Employed (Yes=1 / No=0) .087** -.07**Adjusted R square .051 .011

** p ≤ 0.01 level (2-tailed)

* p ≤ 0.05 level (2-tailed)

Conclusions and discussion on ACSA vs CQ comparisonOBSERVATIONS

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

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.

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.)

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:

1. self-defined biographical extreme scale anchors would represent the (individually specific) saturation levels of happiness and misery, and

2. 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?

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

).

. .