Socio-demographic Profile and Economic Burden of Treatment of Transfusion Dependent Thalassemia
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To compile the socio-demographic profile and estimate the economic burden of transfusion dependent thalassemia.
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.
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.
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.
KeywordsThalassemia Economic burden Demographic study
The authors thank Mr. Avinash Pandey and Ms. Neera for their assistance in data collection.
AM collected the data, drafted the manuscript; SRP conceptualized the study, edited the manuscript and will act as guarantor for this paper.
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