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

Duracinsky, M., Acquadro, C., Herrmann, S., Le Coeur, S., Berzins, B., Kohli, R., Sow, P.S. and Chassany, O. (2008) Simultaneous development in 9 countries of a new health-related quality of life questionnaire specific to HIV/AIDS. In: 15th Annual Conference of the International Society for Quality of Life Research (ISOQOL), 22 - 25 October, Montevideo, Uruguay.


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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