Haemophilia : the official journal of the World Federation of Hemophilia · 2025
Family-Borne Financial Costs of Managing Paediatric Haemophilia in a Government Facility in North India.
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Radhakrishnan Nita, Pandharipande Archit, Gupta Ritu, Verma Shruti, Baby Eby P, Gaire Hari, Singh Manju
Аннотация
BACKGROUND: In India, persons with haemophilia (PWH) are entitled to free diagnostic services, clotting-factor concentrates and physiotherapy. However, families often continue to experience substantial financial hardships for regular treatment. This study aimed to quantify the expenditure borne by such families of PWH treated at our centre and identify contributing factors.
METHODS: At our state-supported haemophilia treatment centre, we assessed costs related to travel, wage loss and ancillary diagnostics and medications. A structured questionnaire, adapted from the cost of haemophilia in Europe: A socioeconomic survey (CHESS), was developed, piloted and pretested. Institutional ethics approval was obtained, and informed consent was taken.
RESULTS: Between 2022 and 2023, 250 caregivers out of 800 registered PWH were interviewed. Among the respondents, 74% belonged to lower socioeconomic strata and 38% were daily-wage earners. Approximately 40% travelled > 100 km per bleeding episode. Educational disruption was reported in 5.6% of PWH. Forty-six per cent experienced frequent interruptions; 66% noted adverse effects on siblings' education. While clotting factors were provided free of cost, 61% spent at least ₹500 per visit, with wage losses ranging from ₹500 to ₹5000 per episode. Income loss among caregivers was reported by 85%. Eighty-seven per cent experienced moderate to extreme financial stress. A broader impact on household economics, including food and education, was noted in 69% of families. Only 5% had access to health insurance.
CONCLUSIONS: Despite free treatment provisions, haemophilia care imposes a significant financial burden. Prophylaxis with home therapy could mitigate these challenges. Incorporating hidden costs into health economic evaluations is essential for informed policy in resource-limited settings.
METHODS: At our state-supported haemophilia treatment centre, we assessed costs related to travel, wage loss and ancillary diagnostics and medications. A structured questionnaire, adapted from the cost of haemophilia in Europe: A socioeconomic survey (CHESS), was developed, piloted and pretested. Institutional ethics approval was obtained, and informed consent was taken.
RESULTS: Between 2022 and 2023, 250 caregivers out of 800 registered PWH were interviewed. Among the respondents, 74% belonged to lower socioeconomic strata and 38% were daily-wage earners. Approximately 40% travelled > 100 km per bleeding episode. Educational disruption was reported in 5.6% of PWH. Forty-six per cent experienced frequent interruptions; 66% noted adverse effects on siblings' education. While clotting factors were provided free of cost, 61% spent at least ₹500 per visit, with wage losses ranging from ₹500 to ₹5000 per episode. Income loss among caregivers was reported by 85%. Eighty-seven per cent experienced moderate to extreme financial stress. A broader impact on household economics, including food and education, was noted in 69% of families. Only 5% had access to health insurance.
CONCLUSIONS: Despite free treatment provisions, haemophilia care imposes a significant financial burden. Prophylaxis with home therapy could mitigate these challenges. Incorporating hidden costs into health economic evaluations is essential for informed policy in resource-limited settings.