{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,9]],"date-time":"2026-03-09T09:01:26Z","timestamp":1773046886878,"version":"3.50.1"},"reference-count":19,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2021,9,7]],"date-time":"2021-09-07T00:00:00Z","timestamp":1630972800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2021,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Physiotherapy is highly recommended for persons with haemophilia (PWH), to regain functioning after bleeding and to maintain functioning when dealing with haemophilic arthropathy. However, many PWH live too far from their Haemophilia Comprehensive Care Centre (HCCC) to receive regular treatment at their HCCC. Physiotherapists in primary care may have limited experience with a rare disease like haemophilia.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aim<\/jats:title><jats:p>To explore experiences of stakeholders with primary care physiotherapy for PWH and develop recommendations to optimize physiotherapy care coordination.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A RAND approach was used, consisting of a Delphi procedure with e\u2010mailed questionnaires and a consensus meeting. Included stakeholders were PWH, physiotherapists from HCCC's and primary care physiotherapists. HCCC physiotherapists approached patients from their centre and primary care physiotherapists from their network to fill in the questionnaires. Purposive sampling was used to select participants from the survey sample for the consensus meeting.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Ninety\u2010six primary care physiotherapists, 54 PWH and eight HCCC physiotherapists completed the questionnaire. Subsequently, four PWH, three primary care physiotherapists and four HCCC physiotherapists participated in the consensus meeting. The questionnaires yielded 33 recommendations, merged into a final list of 20 recommendations based on the consensus meeting. The final rank\u2010order consists of 13 recommendations prioritized by at least one stakeholder.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Commitment to a formal network is considered not feasible for a rare disease like haemophilia. Development of a practice guideline, easy\u2010accessible information and contact details, two\u2010way and open communication between HCCC and primary care and criteria to refer back to the HCCC are recommended.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.14404","type":"journal-article","created":{"date-parts":[[2021,9,7]],"date-time":"2021-09-07T18:07:20Z","timestamp":1631038040000},"page":"1051-1061","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["Coordinating physiotherapy care for persons with haemophilia"],"prefix":"10.1111","volume":"27","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1910-999X","authenticated-orcid":false,"given":"Merel A.","family":"Timmer","sequence":"first","affiliation":[{"name":"Van Creveldkliniek University Medical Centre Utrecht Utrecht University  The Netherlands"},{"name":"Physical Therapy Research Department of Rehabilitation, Physical Therapy Science and Sport UMC Utrecht Brain Centre Utrecht University  The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Johan","family":"Blokzijl","sequence":"additional","affiliation":[{"name":"Van Creveldkliniek University Medical Centre Utrecht Utrecht University  The Netherlands"},{"name":"Physical Therapy Research Department of Rehabilitation, Physical Therapy Science and Sport UMC Utrecht Brain Centre Utrecht University  The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2762-6033","authenticated-orcid":false,"given":"Roger E. G.","family":"Schutgens","sequence":"additional","affiliation":[{"name":"Van Creveldkliniek University Medical Centre Utrecht Utrecht University  The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cindy","family":"Veenhof","sequence":"additional","affiliation":[{"name":"Physical Therapy Research Department of Rehabilitation, Physical Therapy Science and Sport UMC Utrecht Brain Centre Utrecht University  The Netherlands"},{"name":"Research Group Innovation of Human Movement Care University of Applied Sciences Utrecht  The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Martijn F.","family":"Pisters","sequence":"additional","affiliation":[{"name":"Center for Physical Therapy Research and Innovation in Primary Care Julius Health Care Centres  The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2021,9,7]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2012.02909.x"},{"key":"e_1_2_9_3_1","unstructured":"EURORDIS. Rare Diseases: understanding this Public Health Priority.2005."},{"key":"e_1_2_9_4_1","unstructured":"Analysis. OoLPa. 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