{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T09:02:25Z","timestamp":1790326945856,"version":"4.1.0"},"reference-count":23,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T00:00:00Z","timestamp":1790294400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T00:00:00Z","timestamp":1790294400000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100012112","name":"Swedish Orphan Biovitrum","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100012112","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>There is limited qualitative published real\u2010world data on treatment patterns among people with severe haemophilia A (PwSHA), particularly those with unmet needs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>This qualitative study aimed to explore the impact of taking prophylactic extended half\u2010life factor VIII (EHL\u2010FVIII) or emicizumab on psychosocial and physical experiences of PwSHA.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      This study included 69 adults with severe haemophilia A without inhibitors from France, Germany, Italy, Spain, UK (\n                      <jats:italic>n<\/jats:italic>\n                      = 10 per country), and US (\n                      <jats:italic>n<\/jats:italic>\n                      = 19), all receiving emicizumab (54%) or EHL FVIII (46%) for \u22651 year. Participants reporting treatment dissatisfaction or unmet needs were recruited via a patient panel and completed 30\u2010minute online semi\u2010structured interviews. Interviews were recorded, transcribed, and analysed using framework analysis, with codes condensed and grouped into overarching themes reflecting recurring patterns and relevance to the research question.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Five themes were identified from the study interviews: high disease burden, treatment\/management patterns, impact of symptoms on daily activities, satisfaction with current treatment, and ideal treatment characteristics. Both subgroups reported breakthrough bleeds, pain, and joint damage, often requiring additional factor (reported by \u223c90%) and other strategies to maintain mobility. While generally satisfied, 65% of emicizumab users and 78% of EHL\u2010FVIII users expressed a need for greater protection.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This study examined treatment patterns and unmet needs in adults with severe haemophilia A receiving emicizumab or EHL\u2010FVIII. Persistent symptoms (bleeds, pain, and joint damage) imposed limitations on PwSHA's daily life, and both subgroups reported continued use of additional factor therapy, as well as reduced satisfaction with treatment protection and administration frequency.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70406","type":"journal-article","created":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T08:12:36Z","timestamp":1790323956000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Patient Perspectives in Haemophilia A: Unmet Needs of Individuals Receiving Factor and Non\u2010Factor Treatments"],"prefix":"10.1111","author":[{"given":"Nana","family":"Kragh","sequence":"first","affiliation":[{"name":"Sobi  Stockholm Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Veruska","family":"Carboni","sequence":"additional","affiliation":[{"name":"Sobi  Stockholm Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Duygu","family":"Bozkaya","sequence":"additional","affiliation":[{"name":"Sanofi  Cambridge Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Idaira","family":"Rodriguez\u2010Santana","sequence":"additional","affiliation":[{"name":"Prime HCD  Knutsford UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudia","family":"Mighiu","sequence":"additional","affiliation":[{"name":"Prime HCD  Knutsford UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bethany","family":"Franks","sequence":"additional","affiliation":[{"name":"Prime HCD  Knutsford UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Arnoud","family":"Plat","sequence":"additional","affiliation":[{"name":"Nederlandse Vereniging van Hemofilie\u2010Pati\u00ebnten (NVHP)  Nijkerk the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Randall","family":"Curtis","sequence":"additional","affiliation":[{"name":"Northern California Bleeding Disorders Foundation  Morgan Hill California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,9,25]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41572\u2010021\u201000278\u2010x"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.blre.2021.100852"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/rth2.12106"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjh.16704"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12929\u2010021\u201000760\u20104"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.2450\/2019.0211\u201019"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1055\/s\u20100036\u20101571315"},{"key":"e_1_2_10_9_1","unstructured":"European Medicines Agency. \u201cFirst\u2010in\u2010Class Medicine to Prevent Bleeding in Haemophilia A Patients With Inhibitors \u201d2018. Accessed February 2026 https:\/\/www.ema.europa.eu\/en\/news\/first\u2010class\u2010medicine\u2010prevent\u2010bleeding\u2010haemophilia\u2010patients\u2010inhibitors."},{"key":"e_1_2_10_10_1","unstructured":"US Food and Drug Administration. \u201cFDA Approves Emicizumab\u2010kxwh for Hemophilia A With or Without Factor VIII Inhibitors \u201d2018. Accessed February 2026 https:\/\/www.fda.gov\/drugs\/drug\u2010approvals\u2010and\u2010databases\/fda\u2010approves\u2010emicizumab\u2010kxwh\u2010hemophilia\u2010or\u2010without\u2010factor\u2010viii\u2010inhibitors."},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood\u20102019\u2010123654"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.3390\/jcm10194303"},{"key":"e_1_2_10_13_1","unstructured":"European Medicines Agency. \u201cFirst Gene Therapy to Treat Severe Haemophilia A \u201d2022. Accessed 14 January 2026 https:\/\/www.ema.europa.eu\/en\/news\/first\u2010gene\u2010therapy\u2010treat\u2010severe\u2010haemophilia."},{"key":"e_1_2_10_14_1","unstructured":"US Food and Drug Administration. \u201cRoctavian Prescribing Information \u201d2023 Accessed 14 January 2026 https:\/\/www.fda.gov\/vaccines\u2010blood\u2010biologics\/roctavian."},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1007\/s12325\u2010025\u201003368\u20104"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1177\/20406207251398986"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14524"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140\u20106736(01)05627\u20106"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.2147\/PPA.S239810"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14190"},{"key":"e_1_2_10_21_1","doi-asserted-by":"publisher","DOI":"10.1007\/s40271\u2010019\u201000395\u20106"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13404"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471\u20102288\u201013\u2010117"},{"key":"e_1_2_10_24_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood\u20102024\u2010204490"}],"container-title":["Haemophilia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.70406","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/hae.70406","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.70406","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T08:12:38Z","timestamp":1790323958000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hae.70406"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,9,25]]},"references-count":23,"alternative-id":["10.1111\/hae.70406"],"URL":"https:\/\/doi.org\/10.1111\/hae.70406","archive":["Portico"],"relation":{},"ISSN":["1351-8216","1365-2516"],"issn-type":[{"value":"1351-8216","type":"print"},{"value":"1365-2516","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,9,25]]},"assertion":[{"value":"2026-04-08","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-09-08","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-09-25","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"hae.70406"}}