An epidemiological study on quality of life of beta-thalassaemia major children & its correlates in Kolkata, West Bengal

Abstract Background & objectives: Quality of life (QoL) of thalassaemic children is likely to be impaired in comparison to their healthy counterparts. Knowledge of attributes affecting QoL of thalassaemic children may help to find out the key areas of interventions to improve it. Thus, the current study was envisioned to find out QoL of beta-thalassaemia major (β-TM) children and its various correlates. Methods: An institution-based observational study, cross-sectional in design, was conducted in the thalassaemia unit of Calcutta National Medical College and Hospital, Kolkata, West Bengal, India, between May 2016 and April 2017. In the study period, 328 β-TM children and their caregivers were interviewed using a structured schedule. Results: In the final multivariable logistic regression model, thalassaemic children who were residing in an urban area [adjusted odds ratio (AOR): 3.8 (1.8-7.9)], had mothers with higher educational level (middle and above) [AOR: 2.1 (1.1-4.0)], working parents [AOR: 2.7 (1.2-6.3)], no family history of thalassaemia [AOR: 3.5 (1.6-8.0)], received less number of blood transfusion in the previous year (<12) [AOR: 2.1 (1.1-4.2)], higher pre-transfusional haemoglobin (Hb) level [AOR: 1.7 (1.1-2.6)], no transfusion-transmitted infections [AOR: 2.8 (1.5-5.2)], higher body mass index z-score [AOR: 1.6 (1.1-2.2)] and higher caregivers’ care-related QoL (CarerQoL) score (>5) [AOR: 3.2 (1.6-6.2)] were more likely to have favourable QoL (Peds4QL score >54.3). Interpretation & conclusions: QoL of the study participants was significantly correlated with their caregiver’s 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.