title: A new condition specific quality of life measure for the blind and the partially sighted in Sub-Saharan Africa, the IOTAQOL: methodological aspects of the development procedure.
abstract: In Mali, blind and partially sighted people represent 1.2% of the population. Good quality and low cost ophthalmologic care is available, but, unfortunately, is insufficiently taken advantage of. In order to contribute to the analysis of this situation a valid and reliable questionnaire was needed to take the patient's perspective into account. Because of face validity concerns, it was not possible to merely translate an existing questionnaire. Thus we decided to develop a new questionnaire directly in one of the main languages of Mali: Bambara. This involved the setting of a study team composed of social and health science specialists, the majority of whom were native Bambara speakers. The overall project consisted in the iteration of three main steps (1) Conceptual clarification and operationalization of this concept. (2) Qualitative steps: qualitative interviews, focus groups and content analysis. (3) Quantitative steps: statistical analysis of an initial try-out survey (143 participants) and a validation survey (420 participants). This approach yields satisfying results. Indeed, the final version of the IOTAQOL has good psychometric properties. Thus, this interviewer administered instrument can be used to measure health-related quality-of-life in Mali and the methodology that we used could serve as a basis for similar projects.
authors.affiliation: Département Histoire et Philosophie des Sciences, Université Paris 7 - Denis Diderot, UFR de Biologie et Sciences de la Nature, 2 place Jussieu, 75251, Paris Cedex 05, France. alain.leplege@paris7.jussieu.fr
authors.forename: Alain
authors.initials: A
authors.lastname: Leplège
authors.forename: Jean François
authors.initials: JF
authors.lastname: Schemann
authors.forename: Bah
authors.initials: B
authors.lastname: Diakité
authors.forename: Ousmane
authors.initials: O
authors.lastname: Touré
authors.forename: Emmanuel
authors.initials: E
authors.lastname: Ecosse
authors.forename: Yannick
authors.initials: Y
authors.lastname: Jaffré
authors.forename: Gérard
authors.initials: G
authors.lastname: Dumestre
mesh_terms: D000293:Adolescent; D000328:Adult; D017954:Africa South of the Sahara; D000368:Aged; D001766:Blindness / Q000523:psychology*; D003906:Developing Countries; D005260:Female; D017144:Focus Groups; D006302:Health Services Research; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008302:Mali; D008875:Middle Aged; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life / Q000523:psychology*; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D019987:Persons with Visual Disabilities / Q000523:psychology*