Socio-demographic Profile and Economic Burden of Treatment of Transfusion Dependent Thalassemia

Objective: To compile the socio-demographic profile and estimate the economic burden of transfusion dependent thalassemia.

Methods: This cross-sectional descriptive study was conducted at a tertiary care hospital in north India. Transfusion dependent thalassemia patients on regular blood transfusion for at least a year were selected. Thalassemia diagnosis was based on HPLC and/or mutation analysis results. Clinical and laboratory parameters were collected from electronic health records. Information regarding socio-economic profile and costs incurred, including indirect costs were collected by interviewing patients' guardians. The data was analyzed as a whole cohort and also in subgroups based on age.

Results: The data of 261 patients with a median age of 127 mo was collected. The median age at diagnosis was 9.8 mo. The total treatment expenses of a patient per year ranged from US$ 629 (INR 41,514) to US$ 2300 (INR 151,800), in the different age groups, at an average of US$ 1135 (INR 74,948). More than half (53%) of this was spent on medications. On an average, 38.8% of the family income was spent on the treatment of a thalassemia patient annually. Only 19 of 262 cases had an average pre-BT Hb ≥ 9 g/dl and serum ferritin ≤1500 ng/dl.

Conclusions: The treatment for transfusion dependent thalassemia is costly and mostly borne by the families in India. This study provides a realistic magnitude of this burden and will be useful in planning a thalassemia management program at the state or national level.