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.

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“…If a household had more than one eligible inhabitant who could be sex- and age-matched with the household interviewer, the first eligible individual to interact with the interviewer was selected to undergo the informed consent process after an explanation of the nature of the study. The consent form was read aloud upon request and to all illiterate individuals in Bambara, the main language in Mali [36]. Illiterate individuals who chose to take part in the study completed the informed consent process by signing with a fingerprint and a literate witness verified the process with a signature.…”

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“…Six knowledge items were written in the form of true/false/don't know. For the 23 attitude items, Likert-style questions were developed since this format had been used previously with success in Mali (Leplege et al 2006). The final set of 29 questions (six knowledge items plus 23 attitudes items) was then translated into French, the official language of Mali, then Bambara, and backtranslated into French.…”

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“…The development methodology and the psychometric properties of the IOTA QOL have been presented elsewhere (2). Briefly, we developed at IOTA a quality of life questionnaire from the African patients' perspective.…”

“…The IOTA QOL questionnaire was specifically adapted to the people of rural regions of Sahelian Africa and correspond to their cultural environment. This instrument has proved to discriminate between groups of patients of different categories of visual impairment (2) and it proves in this survey to be sensitive to clinical changes after cataract surgery.…”