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Education about haemophilia resulted in improvement of knowledge, and practice of management of bleeding which was retained till a year after the intervention. However, a long-term effect on the HRQOL of parents could not be observed after administration of a single education intervention.

In low-income countries, haemophilia treatment is not supported by national health services. Data on the burden of out-of-pocket (OOP) expenditure on households are unavailable from these countries. This study measured the OOP expenditure on treatment of haemophilia by Indian households. We used 20 weeks of follow-up data of 24 haemophilia A patients to estimate the annual bleeding rate for each patient and the actual OOP expenditure on treatment. We used this observational data to calculate the annual OOP expenditure on treatment if all bleeding episodes were to be treated with clotting factor concentrate. Using previously published methodology, we estimated if the expenditure was catastrophic to households or not. The observed monthly expenditure on treatment ranged from 1.5% to 12% of monthly income as not all bleeding episodes were treated with clotting factor concentrate. The estimated monthly expenditure if all bleeding episodes occurring over 1 year were to be treated would range from 21 to 314 times the monthly income of families. Nearly 68% of households would have experienced catastrophic expenditure. Treatment for haemophilia results in significant OOP expenditure for households, which is avoided by not providing standard treatment to patients. There is a need to mobilize prevention and care services for haemophilia in India and other low-income countries to mitigate the suffering due to lack of affordable treatment.