{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,11]],"date-time":"2026-03-11T11:16:46Z","timestamp":1773227806530,"version":"3.50.1"},"reference-count":29,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2025,7,23]],"date-time":"2025-07-23T00:00:00Z","timestamp":1753228800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2025,7,23]],"date-time":"2025-07-23T00:00:00Z","timestamp":1753228800000},"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"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2025,9]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Treatment decision making can be complex and challenging for people with haemophilia (PwH) and their caregivers. A shared decision\u2010making (SDM) approach can ensure that decisions about treatment and care incorporate patients\u2019 beliefs, values, and preferences.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aims<\/jats:title>\n                    <jats:p>The aims were to: (1) identify potential drivers and barriers to SDM between PwH\/caregivers and clinicians, (2) develop tools to facilitate SDM in clinic appointments, and (3) gain feedback on the usability and design of these tools to inform refinements.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Virtual focus groups were conducted with adolescent and adult PwH, caregivers of children with haemophilia, and physicians and allied health professionals (AHPs) across Canada to inform the development of tools to support SDM in clinical appointments. The usability and acceptability of the tools were examined in one\u2010to\u2010one interviews. These findings were used to further refine the tools.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Thematic analysis from five focus groups (\n                      <jats:italic>n<\/jats:italic>\n                      = 23) identified broad themes pertaining to barriers of SDM, factors influencing treatment decisions, and strategies to facilitate SDM. Insights were used to develop an Appointment Planner including pre\u2010appointment questions and priority setting for PwH\/caregivers and a Conversational Prompt Guide including considerations for clinicians. The findings of one\u2010to\u2010one interviews (\n                      <jats:italic>n<\/jats:italic>\n                      = 25) indicated good usability and acceptability and informed minor refinements to the tools.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>The study demonstrates the acceptability of specific tools to facilitate SDM based on qualitative research with the target populations. Initial feedback was positive. Further research is required to assess whether the tools can facilitate SDM by improving communication and strengthening relationships between PwH\/caregivers and clinicians.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70062","type":"journal-article","created":{"date-parts":[[2025,7,23]],"date-time":"2025-07-23T13:26:53Z","timestamp":1753277213000},"page":"933-948","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Enhancing Engagement to Support Shared Decision Making Within Haemophilia: Development of Materials for People With Haemophilia, Caregivers and Healthcare Professionals"],"prefix":"10.1111","volume":"31","author":[{"given":"Laura","family":"Meade","sequence":"first","affiliation":[{"name":"Sprout Health Solutions  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0205-9722","authenticated-orcid":false,"given":"Haowei (Linda)","family":"Sun","sequence":"additional","affiliation":[{"name":"Division of Hematology Department of Medicine University of Alberta  Edmonton Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6913-2808","authenticated-orcid":false,"given":"Robert J.","family":"Klaassen","sequence":"additional","affiliation":[{"name":"Children's Hospital of Eastern Ontario  Ottawa Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Roxana","family":"Bahar","sequence":"additional","affiliation":[{"name":"Sprout Health Solutions  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shade","family":"Olatunde","sequence":"additional","affiliation":[{"name":"Hoffmann\u2010La Roche Ltd.  Mississauga Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michelle","family":"Santos","sequence":"additional","affiliation":[{"name":"Hoffmann\u2010La Roche Ltd.  Mississauga Canada"},{"name":"Lawrence S. Bloomberg Faculty of Nursing University of Toronto  Toronto Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sheri","family":"vanGunst","sequence":"additional","affiliation":[{"name":"Hoffmann\u2010La Roche Ltd.  Mississauga Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2025,7,23]]},"reference":[{"key":"e_1_2_13_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.blre.2021.100890"},{"key":"e_1_2_13_3_1","unstructured":"Canadian Hemophilia Society.Treatment of Hemophilia. [cited 2022 October 19].https:\/\/www.hemophilia.ca\/treatment\u2010of\u2010hemophilia\/."},{"key":"e_1_2_13_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14046"},{"key":"e_1_2_13_5_1","doi-asserted-by":"publisher","DOI":"10.1055\/s-0042-1756188"},{"key":"e_1_2_13_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12495"},{"key":"e_1_2_13_7_1","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.2012.1061"},{"key":"e_1_2_13_8_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.e256"},{"key":"e_1_2_13_9_1","first-page":"2020","article-title":"What Does the Evolution From Informed Consent to Shared Decision Making Teach Us About Authority in Health Care?","volume":"22","author":"Childress J.","year":"2020","journal-title":"AMA Journal of Ethics"},{"key":"e_1_2_13_10_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2019-031763"},{"key":"e_1_2_13_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2005.06.010"},{"key":"e_1_2_13_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2007.03.023"},{"key":"e_1_2_13_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2019.12.004"},{"key":"e_1_2_13_14_1","doi-asserted-by":"publisher","DOI":"10.7224\/1537-2073.2017-070"},{"key":"e_1_2_13_15_1","doi-asserted-by":"publisher","DOI":"10.17225\/jhp00178"},{"key":"e_1_2_13_16_1","doi-asserted-by":"publisher","DOI":"10.1177\/2040620718784830"},{"key":"e_1_2_13_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2011.02714.x"},{"key":"e_1_2_13_18_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14037"},{"issue":"2","key":"e_1_2_13_19_1","first-page":"4","article-title":"A Three Cycle View of Design Science Research","volume":"19","author":"Hevner A.","year":"2007","journal-title":"Scandinavian Journal of Information Systems"},{"key":"e_1_2_13_20_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.15026"},{"key":"e_1_2_13_21_1","doi-asserted-by":"publisher","DOI":"10.3402\/qhw.v9.26152"},{"key":"e_1_2_13_22_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2007.04569.x"},{"key":"e_1_2_13_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.zefq.2022.04.006"},{"key":"e_1_2_13_24_1","first-page":"5583","article-title":"Ethical Decision Making Framework in Previously Untreated Severe Hemophilia a Patients (Abstract)","volume":"130","author":"Lanzel A. 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