Abstract

Beta thalassemia pose a significant health burden in India. The average prevalence of its carriers is 3–4% which translates to 35 to 45 million carriers in our multi-ethnic, culturally, and linguistically diverse population of 1.21 billion people according to the Census of India 2011. Quality of life (QOL) assessments are important and are frequently required when evaluating health outcomes.¹
Aims: To assess the socio-demographic profile and the factors affecting quality of life in thalassemia major patients.
 Material and Methods: The present study was a cross-sectional study. This study was conducted from 1^st April 2021 to 31^st March 2022 at Rajindra Hospital, Patiala. 113 participants were included for study. Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Core Scale was employed for measuring quality of life.
Results: 31(27.4%) participants were 5-7 years of age, 35 (31.0%) participants were 8-12 years of age, and 47 (41.6%) participants were 13-18 years of age. QOL scores in different domains of PedsQL scale classified by age groups was found to be statistically significant amongst both child self-report and parent proxy- report.  
Conclusion: Evidence continues to accumulate on the importance of HRQOL in all aspects of patient care. QOL scores in different domains of PedsQL scale classified by age groups was found to be statistically significant amongst both child self-report and parent proxy- report. QOL scores in different domains of PedsQL scale classified by age at diagnosis was not found to be statistically significant amongst both child self -report and parent proxy- report except for mean school functioning domain in parent -proxy report where it was found to be statistically significant (p=0.041).