Factors Influencing Quality of Life Among Hiv-Infected Children and Adolescents: A Cross-Sectional Study From a Regional Paediatric Antiretroviral Therapy Centre in Eastern India

Background: With highly active antiretroviral therapy (HAART), paediatric HIV infection has become a chronic illness,making health-related quality of life (QOL) a key outcome. Data on the determinants of QOL among HIV-infected childrenin India are scarce. The objective is to assess the relative influence of socio-demographic, socio-economic, nutritional andclinical factors on QOL in HIV-infected children and adolescents, to compare QOL according to duration of HAART, and todetermine agreement between child self-report and parent-proxy report on the Pediatric Quality of Life Inventory (PedsQL)4.0. Materials and Methods: This observational cross-sectional study enrolled 150 HIV-infected children (8–12 years) andadolescents (13–18 years) attending the Regional Paediatric ART Centre, Medical College, Kolkata. QOL was measured withthe Bengali-translated PedsQL 4.0 Generic Core Scales (child self-report and parent-proxy report) and dichotomised as “atrisk” using published cut-off scores. Associations were tested with the chi-square or Fisher’s exact test, and self–proxyagreement with Cohen’s kappa. Results: Overall, 49 (32.7%) participants were at risk on physical, 10 (6.7%) on psychosocialand 39 (26.0%) on total self-reported QOL, and 10 (6.7%) on proxy-reported total QOL. Poor QOL was significantly associatedwith absence of financial support from the father, non-receipt of a monetary grant, school attendance ≤75%, parental (versusnon-parental) caregiving, employed caregiver, WHO clinical stage III/IV, CD4 count <350 cells/μL, tuberculosis, otheropportunistic infections and HAART for ≤6 months (all p < 0.05). Undernutrition was associated with poorer physical andtotal self-reported QOL. Age and sex were not significantly associated with QOL. Agreement between self- and proxy-reportedtotal QOL was poor (κ = 0.20). Conclusion: Socio-economic deprivation, advanced disease, opportunistic infections andshorter HAART exposure are the principal correlates of poor QOL. Parents substantially under-recognise their children’simpaired QOL, so child self-report should be routinely incorporated into paediatric HIV care.