Assessment of health related quality of life in HIV positive children

Abstract

Background: Quality of life is an important concept because it is the essence of health as defined by the WHO. Pain and other distressing symptoms affect children's quality of life. There is very little published information on pain in children with HIV infection, its prevalence or its affect on their quality of life. This study will add to a growing body of literature on health-related quality of life (HRQOL), but more specifically address these issues in a South African context of HlV/AIDS in children. Such data is currently not available. Methods: A cross sectional descriptive study with an analytic component was performed on a convenience sample of 30 caregivers who attended the Paediatric HIV Clinic at Chris Hani Baragwanath Hospital, Johannesburg. All data was collected by a single investigator over a 4 month period. An established, multidimensional health related quality of life assessment tool (The PedsQL(TM) 4.0) designed for children, was used to measure HRQOL. Results: Mean HRQOL scores were evaluated as well as those for physical and psychosocial health. Scores resembled those of children with other chronic diseases. Disease progression affected the scores with lower values for those children with advanced disease. Where no disclosure of HIV status occurred scores were lower for all dimensions. The prevalence of pain in HIV-affected children was 83%. Caregivers reported 55 individual pains in 12 different regions of the body. On average each patient had 2.3 pain sites. Parents often had difficulty describing the nature of the children's pain. Moderate to severe pain was associated with decreased HRQL scores. Discussion: This study is the first to examine pain and HRQOL in HIV-infected children in South Africa. As the nature of HIV changes to a chronic disease with the availability of antiretroviral treatment, HRQOL will become more important as a medical outcome measure. The PedsQL inventory is brief, easy to understand and takes only about 10 minutes to complete. This makes it an ideal tool for a busy clinic setting. Comprehensive, multidisciplinary health services will be required to minimize long-term illness and disability and to maximize children's potential as they move into adolescence and adulthood. The small study number leant itself to a descriptive study of exploratory nature. A follow up study which includes children's self report in their first language would be valuable.