{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,15]],"date-time":"2026-06-15T19:53:52Z","timestamp":1781553232252,"version":"3.54.5"},"reference-count":18,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2024,11,15]],"date-time":"2024-11-15T00:00:00Z","timestamp":1731628800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2025,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Rare coagulation disorders (RCDs) constitute an important health risk. Data on epidemiology, quality of life (QoL), access to care, and impact of the ongoing economic crisis on RCDs in Lebanon is limited.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aim<\/jats:title><jats:p>We aimed to address these gaps by evaluating effect of the crisis on the\u00a0management of RCDs.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We performed a retrospective chart review of RCD pediatric patients in a tertiary hospital between 2003 and 2023. Patients with deficiencies of fibrinogen, factor (F)II, FV, combined FV and FVIII, FVII, FXI, FXII, FXIII, and congenital deficiency of vitamin K\u2010dependent factors (VKCFDs) underwent a qualitative assessment of the impact of the economic crisis on care and quality of life by an interview aimed at investigating obstacles to diagnosis, disparities in access to treatment, impact of the crisis on QoL and disease management, and opinion on governmental efforts to solve the health crisis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>46 patients were included. The response rate for the interview was 63%. Among the cohort, 21 (72.4%) reported difficulty accessing treatment since the start of the crisis and 18 (62%) reported \u201clack of healthcare coverage for necessary treatments\u201d as the main issue. Most participants reported that the Lebanese government did not adequately address their needs during the crisis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Our study showcased that management of RCD patients in Lebanon has been severely affected by the economic crisis. Combined efforts by public and private sectors are needed to appropriately address this issue. Lessons can be learned from the Lebanese experience to appropriately screen for actionable factors in vulnerable populations.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.15123","type":"journal-article","created":{"date-parts":[[2024,11,15]],"date-time":"2024-11-15T13:29:37Z","timestamp":1731677377000},"page":"63-68","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Challenges in the diagnosis and management of patients with rare coagulation disorders in Lebanon and consequences of a social and economic crisis"],"prefix":"10.1111","volume":"31","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6392-1590","authenticated-orcid":false,"given":"Roula","family":"Farah","sequence":"first","affiliation":[{"name":"Department of Pediatrics Lebanese American University Medical Center Rizk Hospital  Beirut Lebanon"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michel","family":"Boustany","sequence":"additional","affiliation":[{"name":"Gilbert and Rose\u2010Marie Chagoury School of Medicine Lebanese American University  Byblos Lebanon"},{"name":"Department of Internal Medicine Lebanese American University Medical Center Rizk Hospital  Beirut Lebanon"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Philippe","family":"Saad","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Lebanese American University Medical Center Rizk Hospital  Beirut Lebanon"},{"name":"Gilbert and Rose\u2010Marie Chagoury School of Medicine Lebanese American University  Byblos Lebanon"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alessandro","family":"Casini","sequence":"additional","affiliation":[{"name":"Faculty of Medicine  Geneva Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Philippe","family":"de Moerloose","sequence":"additional","affiliation":[{"name":"Faculty of Medicine  Geneva Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,11,15]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/ijlh.14266"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1055\/s-0029-1225757"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2012-3662"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood.V96.10.3650"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1097\/MPH.0b013e31828e52b6"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood.2020009472"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.13694"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.24241\/NotesInt.2022\/275\/en"},{"key":"e_1_2_11_10_1","article-title":"Overlapping crises in Lebanon increase needs and worsen access to care","author":"M\u00e9decins sans Fronti\u00e8res","year":"2021","journal-title":"M\u00e9decins sans Fronti\u00e8res"},{"key":"e_1_2_11_11_1","unstructured":"Lebanon Economic Monitor Fall 2021: The Great Denial.World Bank.2022 https:\/\/hdl.handle.net\/10986\/36862"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(20)30407-4"},{"key":"e_1_2_11_13_1","volume-title":"The World Bank In Lebanon","author":"The World Bank","year":"2022"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1080\/10245332.2016.1263007"},{"issue":"4","key":"e_1_2_11_15_1","first-page":"273","article-title":"Inherited bleeding disorders in Iraq and consanguineous marriage","volume":"12","author":"Al\u2010Rahal NK","year":"2018","journal-title":"Int J Hematol Oncol Stem Cell Res"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1160\/TH06-01-0051"},{"key":"e_1_2_11_17_1","volume-title":"Report on the Annual Global Survey 2022","author":"World Federation of Hemophilia","year":"2022"},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.transci.2018.10.009"},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.3111\/13696998.2015.1016228"}],"container-title":["Haemophilia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.15123","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,1,30]],"date-time":"2025-01-30T05:22:18Z","timestamp":1738214538000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hae.15123"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,11,15]]},"references-count":18,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2025,1]]}},"alternative-id":["10.1111\/hae.15123"],"URL":"https:\/\/doi.org\/10.1111\/hae.15123","archive":["Portico"],"relation":{},"ISSN":["1351-8216","1365-2516"],"issn-type":[{"value":"1351-8216","type":"print"},{"value":"1365-2516","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,11,15]]},"assertion":[{"value":"2024-08-25","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-10-28","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-11-15","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}