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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

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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.

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Acknowledgements

We want to thank Pr Sonja Hunt who read a initial version of this paper and provided numerous useful suggestions. This project has been made possible by a grant from the European Union and the French Ministry of Cooperation.

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Authors and Affiliations

  1. 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 Leplège

  2. Institut de Recherche et Développement, UR 24, Dakar, Senegal

    Jean François Schemann

  3. Human Science Institute, Bamako, Mali

    Bah Diakité

  4. Institut d’Ophtalmologie Tropicale d’Afrique (IOTA), Bamako, Mali

    Ousmane Touré

  5. INSERM U292, Le Kremlin-Bicetre, France

    Emmanuel Ecosse

  6. University of Medicine, Bamako, Mali

    Yannick Jaffré

  7. Institut National des Langues et Civilisations Orientales (INALCO), Paris, France

    Gérard Dumestre

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  1. Alain Leplège
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  2. Jean François Schemann
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  3. Bah Diakité
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  4. Ousmane Touré
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  5. Emmanuel Ecosse
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  6. Yannick Jaffré
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  7. Gérard Dumestre
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Correspondence to Alain Leplège.

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Leplège, A., Schemann, J.F., Diakité, B. et al. 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. Qual Life Res 15, 1373–1382 (2006). https://doi.org/10.1007/s11136-006-0023-y

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