An evaluation of the health related quality of life of children with HIV/AIDS

Goldberg, Linda Hazel
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In 2008, 1.8 million children under the age of 15 were living with HIV/AIDS in sub-Saharan Africa. The same report estimates that in 2008, there were 390 000 new infections in children below the age of 15 in Sub- Saharan Africa. Children appear to be the generation most affected by the HIV/AIDS epidemic. With the introduction of Highly Active Antiretroviral therapy (HAART) more perinatally infected children are living into adolescence and beyond. They will have to learn to live with a stigmatising, potentially fatal chronic illness. Health care workers can no longer rely solely on traditionally used outcome measures, such as viral loads and CD4+ percentages, to monitor effectiveness of interventions and treatments. Quality of Life (QoL) has been suggested as an additional essential outcome measure in clinical practice and research involving children living with a chronic illness. In this research the concept of Health Related Quality of Life (HRQoL) is evaluated in HIV-infected children using the PedsQL 4.0 Generic Core Scale (child self-reports, ages five-seven). The PedsQL 4.0 Generic Core Scales has been found to be a valid and reliable HRQoL measurement tool in children with chronic diseases, school-going children and children infected with HIV. Domains of Physical, Emotional, Social and School Functioning were evaluated. The children in the comparison group scored significantly higher (p<0.01) indicating a better quality of life. The HIV-infected children scored significantly lower in all four domains, with Physical Functioning being most affected (p<0.01). The children with HIV were found to be shorter (p<0.01) and lighter (p<0.01) than those in the comparison group. This could be a contributing factor to the physical difficulties experienced by the HIV-infected children. No relationship could be established between total scores of HRQoL and CD4+ percentages, viral load and duration of HAART treatment. Demographic data collected indicate that the HIV-infected children were more likely to have a primary caregiver with a lower level of education (p=0.01) and more likely to be receiving a Dependency Care Grant (p=0.05). The HRQoL results of this study are similar to those conducted in other parts of the world. The results stress the need for a multi-disciplinary approach when treating HIV-infected children. It has become essential to focus on the medical, physical and psychosocial functioning of the HIV-infected child thereby promoting participation in the family, school and the broader community.