{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,6]],"date-time":"2026-10-06T04:39:41Z","timestamp":1791261581605,"version":"4.1.0"},"reference-count":24,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2025,11,25]],"date-time":"2025-11-25T00:00:00Z","timestamp":1764028800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2025,11,25]],"date-time":"2025-11-25T00:00:00Z","timestamp":1764028800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2026,1]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>In India, persons with haemophilia (PWH) are entitled to free diagnostic services, clotting\u2010factor 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>At our state\u2010supported 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>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\u2010wage earners. Approximately 40% travelled &gt;\u00a0100 km per bleeding episode. Educational disruption was reported in 5.6% of PWH. Forty\u2010six per cent experienced frequent interruptions; 66% noted adverse effects on siblings' education. While clotting factors were provided free of cost, 61% spent at least \u20b9500 per visit, with wage losses ranging from \u20b9500 to \u20b95000 per episode. Income loss among caregivers was reported by 85%. Eighty\u2010seven 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>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\u2010limited settings.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70167","type":"journal-article","created":{"date-parts":[[2025,11,25]],"date-time":"2025-11-25T14:23:56Z","timestamp":1764080636000},"page":"80-86","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Family\u2010Borne Financial Costs of Managing Paediatric Haemophilia in a Government Facility in North India"],"prefix":"10.1111","volume":"32","author":[{"given":"Nita","family":"Radhakrishnan","sequence":"first","affiliation":[{"name":"Department of Pediatric Hematology Oncology Post Graduate Institute of Child Health  Noida India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Archit","family":"Pandharipande","sequence":"additional","affiliation":[{"name":"Department of Pediatric Hematology Oncology Post Graduate Institute of Child Health  Noida India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ritu","family":"Gupta","sequence":"additional","affiliation":[{"name":"ICON Plc  \u00a0 India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shruti","family":"Verma","sequence":"additional","affiliation":[{"name":"Department of Pediatric Hematology Oncology Post Graduate Institute of Child Health  Noida India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eby P.","family":"Baby","sequence":"additional","affiliation":[{"name":"Department of Pediatric Hematology Oncology Post Graduate Institute of Child Health  Noida India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hari","family":"Gaire","sequence":"additional","affiliation":[{"name":"Department of Pediatric Hematology Oncology Post Graduate Institute of Child Health  Noida 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