An Epidemiological Study of the Quality of Life of Children With Beta-Thalassemia Major (β-TM) and Its Correlates in Kolkata, West Bengal, India

Background and objectives In contrast to their peers who are healthy, children with thalassemia disease are likely to have a lower quality of life (QoL). Knowledge of attributes affecting the QoL of thalassemic children may help identify key areas of intervention to improve it. Thus, the current study was envisioned to find out the quality of life (QoL) of children with beta-thalassemia major (β-TM) and its various correlates. Methods Between May 2016 and April 2017, an institution-based cross-sectional observational study was conducted in the thalassemia unit of Calcutta National Medical College and Hospital (CNMC&H), Kolkata, West Bengal, India. During the study period, 328 β-TM children and their carers were interviewed using a structured schedule. Results In the final multivariable logistic regression model, thalassemic children who were residing in an urban area (adjusted odds ratio (AOR) (95% confidence interval (CI)): 2.1 (1.1-4.0)), had mothers with a higher educational level (middle and above) (AOR (95%CI): 2.1 (1.1-4.0)), had working parents (AOR (95%CI): 2.7 (1.2-6.3)), had no family history of thalassemia (AOR (95%CI): 3.5 (1.6-8.0)), received less number of blood transfusion in the previous year (<12) (AOR (95%CI): 2.1(1.1-4.2)), had higher pre-transfusional hemoglobin (Hb) level (AOR (95%CI): 1.7(1.1-2.6)), had no transfusion-transmitted infections (TTIs) (AOR (95%CI): 2.8 (1.5-5.2)), had higher body mass index (BMI) Z score (AOR (95%CI): 1.6 (1.1-2.2)), and had higher Carer Quality of Life (CarerQoL) score (>5) (AOR (95%CI): 3.2 (1.6-6.2)) were more likely to have favorable QoL (Pediatric Quality of Life Inventory (PedsQL) score > 54.3). Interpretation and conclusions The QoL of the study participants was significantly correlated with their carers’ CarerQoL, mother’s educational level, parent’s working status, place of residence, family history of the disease, blood transfusion frequency, pre-transfusional Hb level, and nutritional and comorbidity status.