Self-reported and parent proxy health-related quality of life among children living with HIV in North Karnataka, India

Health-Related Quality of Life (HRQoL) is a critical indicator of well-being among Children Living with HIV (CLHIV). This study assessed HRQoL and compared child-parent agreement with associated sociodemographic and clinical factors among CLHIV in the Belagavi district of Karnataka, India. The study employed a cross-sectional design involving 191 CLHIV aged 8 to 18 years and their parent proxy reports in the Antiretroviral Therapy (ART) centres of the Belagavi district. HRQoL was assessed using the validated QOL-CHAI instrument, which has been validated for use among Indian CLHIV. Statistical analyses included non-parametric tests, bivariate associations, and multivariable linear regression analyses to identify predictors of HRQoL. The children indicated high HRQoL in physical, emotional, social, and school domains, signifying minimal discrimination and a low symptom burden. Parents reported higher HRQoL in physical and social domains, while children reported higher overall HRQoL. HRQoL was higher among children cared for by their biological mother than by guardians. Moderate to satisfactory agreement was observed between child self-report and parent proxy report across domains (ICC = 0.47–0.83). The CD4 count was the only independently associated factor of overall HRQoL in multivariable analysis (β = 0.170, p < 0.05). The caregiving arrangement was significantly associated with HRQoL ( p < 0.05). CLHIV and parents reported a higher HRQoL across different domains, along with comparably high parent proxy scores. In this study, caregiving stability, immune status, and psychosocial well-being emerged as key determinants of perceived quality of life in a resource-limited setting.