Caregiver knowledge, socioeconomic challenges and treatment practices in pediatric thalassemia: experience from a resource-constrained setting

Background: Transfusion-dependent thalassemia (TDT) requires lifelong blood transfusion and comprehensive supportive care. In resource-constrained settings, caregiver knowledge and socioeconomic factors may influence treatment adherence and clinical outcomes. This study assessed caregiver knowledge, treatment practices, socioeconomic challenges, and factors associated with blood transfusion adherence among children with TDT in Bangladesh. Methods: A hospital-based cross-sectional study was conducted at the Institute of Child and Mother Health, Dhaka, Bangladesh, between July 2023 and June 2025. One hundred caregiver-child pairs were consecutively enrolled. Data were collected using a pretested structured interviewer-administered questionnaire and verified with hospital records where available. Blood transfusion adherence was categorized as regular or irregular. Multivariable binary logistic regression was performed to identify independent predictors of regular transfusion adherence. Results: Among the 100 enrolled children, 65% had HbE/β-thalassemia and 35% had β-thalassemia major. Regular blood transfusion adherence was observed in 56% of participants. Caregiver knowledge was generally inadequate: 82% had no prior awareness of thalassemia, only 4% knew all recommended treatment modalities, and satisfactory knowledge of nutritional management and disease complications was reported by 13% and 9%, respectively. Nevertheless, 78% expressed willingness to undergo family carrier screening. Most families (80%) financed treatment from their own income, while 17% relied on loans or begging. Paternal educational attainment below the primary level was independently associated with lower odds of regular blood transfusion adherence (adjusted OR 0.324, 95% CI 0.128-0.817; p=0.017). Conclusions: In this study, caregiver knowledge regarding TDT was limited, and nearly half of the children did not receive regular blood transfusions (BT). Financial hardship remained common, with many families relying on loans or begging to sustain treatment. These findings support strengthening caregiver education, genetic counselling, and financial support for affected families.