Family-Borne Financial Costs of Managing Paediatric Haemophilia in a Government Facility in North India
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View abstract on PubMed
Summary
This summary is machine-generated.Despite free treatment, families of persons with haemophilia (PWH) face significant financial burdens due to indirect costs. Addressing these hidden costs is crucial for effective haemophilia management in India.
Area Of Science
- Medical Economics
- Public Health
- Haematology
Background
- Persons with haemophilia (PWH) in India are eligible for free diagnostics, clotting factors, and physiotherapy.
- Despite these provisions, PWH families incur substantial financial hardships for regular treatment.
- This study quantifies the out-of-pocket expenditure for PWH families and identifies contributing factors.
Purpose Of The Study
- To quantify the financial expenditure borne by families of PWH.
- To identify factors contributing to the financial burden of haemophilia care.
- To inform health economic evaluations and policy in resource-limited settings.
Main Methods
- A structured questionnaire, adapted from the CHESS survey, was used.
- Data was collected from 250 caregivers of PWH at a state-supported haemophilia treatment centre.
- Costs assessed included travel, wage loss, and ancillary diagnostics/medications.
Main Results
- 74% of respondents were from lower socioeconomic strata, and 38% were daily wage earners.
- 61% spent at least ₹500 per visit, with significant wage losses reported by 85% of caregivers.
- 87% experienced moderate to extreme financial stress, impacting household economics and education.
Conclusions
- Haemophilia care imposes a significant financial burden on families, even with free treatment provisions.
- Prophylaxis with home therapy may help mitigate these challenges.
- Incorporating hidden costs into health economic evaluations is essential for informed policy.
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