{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,15]],"date-time":"2026-06-15T08:55:39Z","timestamp":1781513739084,"version":"3.54.1"},"reference-count":15,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2026,3,12]],"date-time":"2026-03-12T00:00:00Z","timestamp":1773273600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2026,3,12]],"date-time":"2026-03-12T00:00:00Z","timestamp":1773273600000},"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":[[2026,5]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Haemophilia is a bleeding disorder with implications beyond clinical symptoms, affecting patients' and caregivers\u2019 personal, social, and economic well\u2010being and quality of life. Limited data exist from low\u2010 and middle\u2010income countries like India, where access to care and societal awareness may differ significantly from high\u2010income settings. We aimed to explore the personal, social, and economic impacts of haemophilia on persons with haemophilia (PwH) and their caregivers in India, using a mixed\u2010method approach.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This multicentric, mixed\u2010method study included semi\u2010structured in\u2010depth interviews with 30 participants (15 PwH A \u2013 (Non\u2010inhibitor) and 15 caregivers). Transcribed interviews were analysed using grounded theory, and participants also completed the EQ\u20105D\u20105L and EQ\u2010VAS instruments. Data were analysed using descriptive statistics and thematic analysis to identify key burden areas<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Ten themes emerged, including PwH\u2010specific (chronic pain, disrupted education\/employment, strained relationships), caregiver\u2010specific (coping with diagnosis, social isolation), and shared challenges (financial burden, stigma, limited treatment access). The grounded theory of\n                      <jats:italic>Transformative Resilience<\/jats:italic>\n                      described coping strategies of PwH and caregivers. EQ\u20105D\u20105L showed greatest impairment in mobility (2.47 \u00b1 0.92), with mean utility and VAS scores of 0.678 \u00b1 0.280 and 0.630 \u00b1 0.206, indicating moderate\u2010to\u2010severe QoL compromise.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Haemophilia profoundly affects patients and caregivers, extending beyond physical symptoms to social, emotional, and economic challenges. The study underscores unmet needs arising from financial burden, stigma, and limited resources, emphasizing the need for patient\u2010centred, holistic care models that integrate medical, psychosocial, and economic support in resource\u2010limited settings.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70256","type":"journal-article","created":{"date-parts":[[2026,3,12]],"date-time":"2026-03-12T18:43:08Z","timestamp":1773340988000},"page":"723-730","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Personal, Social, Economic Impacts on Haemophilia A Patients and Caregivers: A Mixed Method Study (WE CARE)"],"prefix":"10.1111","volume":"32","author":[{"given":"Mridul","family":"Makkar","sequence":"first","affiliation":[{"name":"Department of Clinical Haematology Haemato\u2010Oncology and Bone Marrow (Stem Cell) Transplantation, Christian Medical College and Hospital  Ludhiana Punjab India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0820-7332","authenticated-orcid":false,"given":"M. Joseph","family":"John","sequence":"additional","affiliation":[{"name":"Department of Clinical Haematology Haemato\u2010Oncology and Bone Marrow (Stem Cell) Transplantation, Christian Medical College and Hospital  Ludhiana Punjab India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Diksha","family":"Sarwan","sequence":"additional","affiliation":[{"name":"Department of Clinical Haematology Haemato\u2010Oncology and Bone Marrow (Stem Cell) Transplantation, Christian Medical College and Hospital  Ludhiana Punjab India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Soumya","family":"Ojha","sequence":"additional","affiliation":[{"name":"Department of Clinical Haematology Haemato\u2010Oncology and Bone Marrow (Stem Cell) Transplantation, Christian Medical College and Hospital  Ludhiana Punjab India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ranjit","family":"Injety","sequence":"additional","affiliation":[{"name":"Doctoral Fellow The University of Leicester Ulverscroft Eye Unit, School of Psychology and Vision Sciences, University of Leicester  Leicester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Manasi","family":"Gupta","sequence":"additional","affiliation":[{"name":"Department of Clinical Haematology Haemato\u2010Oncology and Bone Marrow (Stem Cell) Transplantation, Christian Medical College and Hospital  Ludhiana Punjab India"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Himanshu","family":"Aggarwal","sequence":"additional","affiliation":[{"name":"Department of Clinical Haematology Haemato\u2010Oncology and Bone Marrow (Stem Cell) Transplantation, Christian Medical College and Hospital  Ludhiana Punjab India"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,3,12]]},"reference":[{"key":"e_1_2_13_2_1","doi-asserted-by":"publisher","DOI":"10.15761\/TiM.1000200"},{"key":"e_1_2_13_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.13754"},{"key":"e_1_2_13_4_1","unstructured":"World Federation of Hemophilia [Internet].2022[cited 2025 Oct 19].Annual Global Survey https:\/\/wfh.org\/research\u2010and\u2010data\u2010collection\/annual\u2010global\u2010survey\/."},{"key":"e_1_2_13_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2009.01987.x"},{"key":"e_1_2_13_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.13874"},{"key":"e_1_2_13_7_1","doi-asserted-by":"publisher","DOI":"10.3390\/jcm12165417"},{"key":"e_1_2_13_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/ctm2.70386"},{"key":"e_1_2_13_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12019"},{"key":"e_1_2_13_10_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-011-9903-x"},{"key":"e_1_2_13_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2021.11.1370"},{"key":"e_1_2_13_12_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/mzm042"},{"key":"e_1_2_13_13_1","doi-asserted-by":"publisher","DOI":"10.1111\/ejh.12328"},{"key":"e_1_2_13_14_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14772"},{"key":"e_1_2_13_15_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12288-015-0562-x"},{"key":"e_1_2_13_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14278"}],"container-title":["Haemophilia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.70256","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/hae.70256","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.70256","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,15]],"date-time":"2026-06-15T08:24:36Z","timestamp":1781511876000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hae.70256"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,3,12]]},"references-count":15,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2026,5]]}},"alternative-id":["10.1111\/hae.70256"],"URL":"https:\/\/doi.org\/10.1111\/hae.70256","archive":["Portico"],"relation":{},"ISSN":["1351-8216","1365-2516"],"issn-type":[{"value":"1351-8216","type":"print"},{"value":"1365-2516","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,3,12]]},"assertion":[{"value":"2025-12-27","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-02-26","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-03-12","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}