Health-related quality of life in children with HIV/AIDS: Child and parent perspectives at a tertiary ART clinic in Kathmandu, Nepal.

BACKGROUND

Children living with human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) face persistent physical, emotional, and social challenges that can reduce their quality of life. In Nepal, evidence describing the health-related quality of life (HRQoL) of this population remains limited.

OBJECTIVE

To assess health-related quality of life and the level of agreement between child self-reports and parent proxy reports among children living with HIV/AIDS receiving antiretroviral therapy at a tertiary care hospital in Kathmandu, Nepal.

METHODS

An analytical cross-sectional study was conducted from July to September, 2022 among 105 children aged 6-18 years and their parents attending the antiretroviral therapy clinic at Tribhuvan University Teaching Hospital. HRQoL was assessed using the Pediatric Quality of Life Inventory Version 4.0 Generic Core Scales which comprises physical, emotional, social, and school functioning domains, for both child self-reports and parent proxy reports. Descriptive statistics summarized participant characteristics and HRQoL scores. Chi-square and Fisher's exact tests examined associations between sociodemographic variables and quality of life. Intraclass correlation coefficients (ICC) were calculated to assess agreement between child self-reports and parent proxy reports.

RESULTS

More than half of the children (58.1%) had poor HRQoL. The mean total HRQoL score from child self-reports was 68.8 ± 5.7, with higher scores in the social (73.5 ± 8.1) and physical (73.3 ± 6.1) domains compared to the emotional (65.1 ± 8.9) and school functioning (62.8 ± 7.5) domains. Parent proxy reports showed slightly higher mean scores (70.4 ± 3.7). Overall agreement between child self-reports and parent proxy reports was poor (ICC = 0.405), with the highest agreement observed in the physical functioning domain.

CONCLUSION

Poor quality of life is common among children living with HIV/AIDS in Nepal, particularly in emotional and school functioning domains. Targeted interventions addressing psychosocial well-being and educational participation are needed to improve overall quality of life in this group.