Non-adherence to Treatment Is Rampant Among Children with Thalassemia Major Due to Social and Economical Reasons: A Prospective Cohort Study

Objectives Regular blood transfusion and iron chelators are cornerstone is management of children with thalassemia major (TM). Adherence to this treatment plan is limited by many factors. We intend to study the adherence rate to the treatment plan for a period of 24 months. Methods Thirty-two children with TM aged from 5 to 18 years were recruited. Their clinical profile and socio-demographic profile were recorded. During the follow-up for a period of 24 months, their adherence to the treatment plan was monitored, and reasons for poor adherence were analysed. Results The mean age of our cohort was 10 ± 3.3 years, and 93.75% of the cohort was non-adherent. Serum ferritin was >1,000 ng/ml in 24 (75%) children. Residence in hilly areas, necessity to travel >100 km or >1,000 rupees direct and indirect expenditure to family per visit to receive blood transfusion or lower socio-economic status was observed in >35% children with non-adherence to treatment. Conclusion Measures to support the families in social and economic front is likely to improve the treatment adherence.