{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,16]],"date-time":"2026-08-16T13:32:59Z","timestamp":1786887179532,"version":"build-2736575974"},"reference-count":25,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2026,2,28]],"date-time":"2026-02-28T00:00:00Z","timestamp":1772236800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2026,2,28]],"date-time":"2026-02-28T00:00:00Z","timestamp":1772236800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100007013","name":"F. Hoffmann-La Roche","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100007013","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004319","name":"Pfizer","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004319","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004339","name":"Sanofi","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004339","id-type":"DOI","asserted-by":"publisher"}]},{"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"],"published-print":{"date-parts":[[2026,5]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Shared decision\u2010making (SDM) is a collaborative process in which people with haemophilia (PWH) and healthcare professionals (HCPs) make treatment decisions informed by the best available evidence and aligned with patient values, preferences and goals. The expanding treatment landscape, including standard, extended and ultra\u2010half\u2010life factors, rebalancing agents, bispecific antibodies and gene therapy, has made SDM an essential element of quality haemophilia care. Despite recognition of its importance in international health policy frameworks and haemophilia\u2010specific guidelines, implementation in clinical practice remains inconsistent, with limited guidance on best practices.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>To address this gap, the World Federation of Hemophilia (WFH), in partnership with the European Association for Haemophilia and Allied Disorders (EAHAD) and the European Haemophilia Consortium (EHC), took a multi\u2010stakeholder consensus initiative to develop best practice statements for SDM in haemophilia.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A structured, modified Delphi process was used during a March 2025 workshop in Lisbon, Portugal, with 27 participants (13 HCPs and 14 PWH) from 15 Western European countries. Participants identified key challenges, drafted candidate statements and engaged in two rounds of anonymous voting with predefined consensus thresholds. Following literature review and facilitated small\u2010 and large\u2010group discussions, 20 candidates\u2019 best practice (BP) statements were drafted and voted on in 2 Delphi rounds. Consensus was defined as \u226570% of participants rating a statement 7\u20139 (critical to include) and \u226415% rating 1\u20133 (not important).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Iterative refinement yielded 15 BP statements achieving consensus. These were organized into three domains: (1) knowledge and tools, (2) patient characteristics and support and (3) HCP\u2014PWH relationship and system infrastructure. Recommendations emphasized embedding SDM into routine care, ensuring adequate time and resources as well as early patient preparation, accessible information in local languages, multidisciplinary involvement and reflection opportunities post consultation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>To the best of the authors\u2019 knowledge, this work represents the first consensus\u2010based framework for implementing SDM in haemophilia, offering practical, stakeholder\u2010driven guidance to support its integration into clinical practice and improve patient\u2010centred outcomes.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70220","type":"journal-article","created":{"date-parts":[[2026,3,8]],"date-time":"2026-03-08T09:19:23Z","timestamp":1772961563000},"page":"680-690","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Implementing Shared Decision\u2010Making in Haemophilia Care: Best Practice Recommendations From a Western European Multi\u2010Stakeholder Delphi Process"],"prefix":"10.1111","volume":"32","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8372-4474","authenticated-orcid":false,"given":"Donna","family":"Coffin","sequence":"first","affiliation":[{"name":"World Federation of Hemophilia  Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4194-8183","authenticated-orcid":false,"given":"Robert","family":"Klamroth","sequence":"additional","affiliation":[{"name":"European Association for Haemophilia and Allied Disorders (EAHAD)  Brussels Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Miguel","family":"Crato","sequence":"additional","affiliation":[{"name":"European Hemophilia Consortium (EHC)  Brussels Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth","family":"Clearfield","sequence":"additional","affiliation":[{"name":"Independent Consultant"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5429-8437","authenticated-orcid":false,"given":"Cedric","family":"Hermans","sequence":"additional","affiliation":[{"name":"Division of Haematology Haemostasis and Thrombosis Unit  Brussels Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karine","family":"Kocharyan","sequence":"additional","affiliation":[{"name":"World Federation of Hemophilia  Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7113-4028","authenticated-orcid":false,"given":"Maria Elisa","family":"Mancuso","sequence":"additional","affiliation":[{"name":"Department of Biomedical Sciences Humanitas University Pieve Emanuele Milan Italy"},{"name":"Center for Thrombosis and Hemorrhagic Diseases IRCCS Humanitas Research Hospital  Rozzano Milan Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Salome","family":"Mekhuzla","sequence":"additional","affiliation":[{"name":"World Federation of Hemophilia  Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9220-1840","authenticated-orcid":false,"given":"Thomas","family":"Sanni\u00e9","sequence":"additional","affiliation":[{"name":"Association Fran\u00e7aise des H\u00e9mophiles  Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0934-0680","authenticated-orcid":false,"given":"Mark","family":"W. Skinner","sequence":"additional","affiliation":[{"name":"Institute for Policy Advancement Ltd  Washington District of Columbia USA"},{"name":"McMaster University  Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Glenn F.","family":"Pierce","sequence":"additional","affiliation":[{"name":"World Federation of Hemophilia  Montreal Quebec Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,2,28]]},"reference":[{"key":"e_1_2_13_2_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp1109283"},{"issue":"460","key":"e_1_2_13_3_1","first-page":"892","article-title":"Shared Decision Making and the Concept of Equipoise: The Competences of Involving Patients in Healthcare Choices","volume":"50","author":"Elwyn G. 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