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Simultaneous development in 9 countries of a new health-related quality of life questionnaire specific to HIV/AIDS
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Simultaneous development in 9 countries of a new health-related quality of life questionnaire specific to HIV/AIDS

M. Duracinsky, C. Acquadro, S. Herrmann, S. Le Coeur, B. Berzins, R. Kohli, P.S. Sow and O. Chassany
15th Annual Conference of the International Society for Quality of Life Research (ISOQOL) (Montevideo, Uruguay, 22/10/2008–25/10/2008)
2008
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Abstract

AIMS: Most Heath-Related Quality of Life (HRQL) questionnaires specific to HIV/AIDS, used in clinical research, were developed when HIV was a deadly disease. They do not adequately measure the impact of the disease and its treatment on People Living With HIV/AIDS (PLWA) anymore. Relevant domains important for PLWA are missing such as sleep, perception about treatment, impact of side effects, lipodystrophy. The assessment of psycho-social impact needs to be improved. The objective is to develop a new Patient-Reported Outcomes (PRO) questionnaire to measure the HRQL of PLWA in different countries and cultures, using an item bank developed with patients. METHODS: The conceptual framework was identified on the basis of patients_ interviews exploring the multidimensionality of PLWA_s HRQL. To be able to capture the cultural differences in patients_ perceptions, the interviews were held in the five continents: Africa (Senegal), America (Brazil, USA), Australia, Asia (Thailand, China, Cambodia, India) and Europe (France). All interviews were recorded, transcribed and translated into English or French. RESULTS: 148 patients were interviewed (47 % women). We identified the PRO concepts to be measured. An endpoint model was designed to explain the relations between different PROs: health status, symptoms, side effects and the different domains of HRQL. Cultural differences were identified for some domains, e.g. daily activities, stigma, relations with family and friends. Using the patients_ verbatim, 300 items were generated in French and in English and organized into a 24-domain item bank. Item reduction to a 70-item questionnaire was done with experts. CONCLUSIONS: A new PRO questionnaire to measure the HRQL of PLWA has been developed. The international development from a very early step will enable a better cultural relevance by improving the translatability of the source questionnaires (French and English) into the target languages. The new PRO HIV specific instrument is undergoing a psychometric validation in each of the 9 countries.

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