Clinical Characteristics, Socio-Demographic Profile, and Quality of Life among Children With Thalassemia Major: A Hospital Based Cross-Sectional Study

Background: Thalassemia major imposes a multi-dimensional burden on the health-related quality of life (HRQoL) of affected children. The Paediatric Quality of Life Inventory (PedsQL) provides a validated, multidimensional assessment of functioning in physical, social, emotional, and school domains. Region-specific data from North India on children's QoL and its clinical determinants remain limited. Material & Methods: A cross-sectional study was conducted among 100 children with thalassemia major (aged 2–18 years) attending a Blood Transfusion Centre in a tertiary care centre of Haryana. Data related to Socio-demographic and clinical profile were recorded. PedsQL 4.0 Generic Core Scales was used for assessment of QoL. Independent samples t-test and Kruskal Wallis Test were applied for assessing associations (p <0.05). Results: The mean PedsQL score was 84.47 ± 8.16. Female children had significantly lower (worse) mean QoL scores than males (81.32 ± 9.85 vs 86.84 ± 5.61, p < 0.001). Children requiring high-frequency transfusions had significantly lower mean QoL scores than those with low-frequency transfusions (83.00 ± 8.63 vs. 88.24 ± 5.26; p = 0.003). Religion, residence, and education were not significantly associated with QoL. Conclusion: A substantial proportion of children with thalassemia have compromised QoL. Female gender and higher transfusion frequency are significant determinants of poorer HRQoL. Gender-sensitive psychosocial support and strategies to reduce transfusion burden are critical components of holistic paediatric thalassemia care.