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 --gt survey form
• scale construction --gt scoring algorithms
• validation and norming --gt interpretation
• publication of results --gt 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

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(No Transcript)
27
WHOQOL-OLD- Cross-cultural structural testing
(pilot)
Country Code nvalid CFI
Scotland 1 116 .967
England 2 145 .970
Germany 3 354 .982
Spain 4 271 .979
Denmark 5 384 .975
Czech R 7 325 ?
Hungary 8 333 .981
Canada 10 178 .967
U.S.A. 12 295 .967
Israel 13 250 .979
Sweden 16 431 .976
Uruquay 20 248 .977
Lithuania 23 342 .977
 
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EUROHIS-QOL 8 item index for different countries
 
29

.001

.647

.006

.039

.003

.596

6

How satisfied are you with your personal
.010

.072

.003

.335

.003

.048

.0
06

.082

relationships

7

Have you enough money to

.027

.000

.001

.013

.015

.005

.006

.102

meet your needs

8

How satisfied are you with the conditions
.014

.000

.004

.919

.027

.977

.010

.078

of your living place


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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.