The health related quality of life of people living with HIV/AIDS in sub-Saharan Africa - a literature review and focus group study

BACKGROUND: While health outcomes of HIV/AIDS treatments in terms of increased longevity has been the subject of much research, there appears to be very limited research on the improved health related quality of life (HRQL) that can be applied in cost-utility analyses in Africa south of the Sahara (SSA). Most of the literature that does exist present HRQL measured by disease specific instruments, but such data is of little use as input to economic evaluations. METHODS: A systematic review of the literature on HRQL weights for people living with HIV/AIDS in Africa was performed, and the findings are presented and interpreted. We also use focus group discussions in panels of clinical AIDS experts to test the preference based on a generic descriptive system EQ-5D. We contrast quality of life with and without antiretroviral treatment (ART), and with and without treatment failure. RESULTS: In only four papers were the HRQL weights for HIV/AIDS in sub-Saharan Africa estimated with generic preference based methodologies that can be directly applied in economic evaluation. A total of eight studies were based on generic health profiles. While such 'health profiles' are not preference based, the scores could potentially be transformed into health state utilities. Most of the available literature (20 papers) utilized disease specific instrument, which are not applicable for economic evaluation. The focus group discussions revealed that HRQL weights are strongly correlated to disease stage. Furthermore, clinical experts consistently report that ART has a strong positive impact on the HRQL of patients, although this effect appears to rebound in cases of drug resistance. CONCLUSIONS: EQ-5D appears to be an appropriate tool for measuring and valuing HRQL of HIV/AIDS in Africa. More empirical research is needed on various methodological aspects in order to obtain valid and reliable HRQL weights in economic evaluations of HIV/AIDS prevention and treatment interventions.