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The Challenge of Cross-Cultural Quality of Life Assessment. Monika Bullinger , Silke Schmidt Institute of Medical Psychology University of Hamburg. Background. Interest in Health-Related Quality of Life as

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the challenge of cross cultural quality of life assessment

The Challenge of Cross-Cultural Quality of Life Assessment

Monika Bullinger, Silke Schmidt

Institute of Medical Psychology

University of Hamburg

background
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)
meanings of the term international
Meanings of the term international
  • political: nation
  • geographical: country
  • anthropological: culture
  • sociological: society
  • psychological: identity

language

demands
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

essential questions
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?
problems
Problems
  • Ethnocentrism?
  • Normativity of concept?
  • Bias in assessment?
  • Ethical consequences?
statement
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

criteria
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

approaches to cross cultural instrument development
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)
steps in instrument development
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)
focus groups
Focus Groups
  • Can help to identify relevant concepts
  • Involve of potential respondents and/or experts
  • can be active in dimension/facet/item generation
cognitive debriefing
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
question writing
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
questions should
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
the translation process
The Translation Process

Quality backward

2 Raters

Quality foreward

2 Raters

Difficulty

2 Raters

Target

Original

Original

2 Translaters

2 Translaters

Comparison

testing response scales
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
cross cultural psychometric testing
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
internationally active groups quality of life working groups
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
iqola project phases
IQOLA Project Phases
  • translation --> survey form
  • scale construction --> scoring algorithms
  • validation and norming --> interpretation
  • publication of results --> user friendly guidelines
iqola project
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
results from the iqola project
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.
who qol project
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.
results from the whoqol project
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.
cross cultural quality of life assessment
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
cross cultural quality of life assessment examples
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

slide29

·

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

summary
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
ethics in cross cultural quality of life research
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
conclusions
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.
future
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.