{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,9]],"date-time":"2026-09-09T13:15:23Z","timestamp":1788959723021,"version":"build-2803163510"},"reference-count":40,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2023,9,11]],"date-time":"2023-09-11T00:00:00Z","timestamp":1694390400000},"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":[[2023,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Joint bleeds in haemophilia cause destruction of articular structures, impaired function and pain. Up to 70% of people with haemophilia (PWH) report chronic pain. Little is known about the pain experiences in PWH in the UK.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aim<\/jats:title><jats:p>To identify prevalence and perceptions of pain among PWH living in the UK.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A cross\u2010sectional, non\u2010interventional survey study conducted among PWH (all severities). The survey incorporated elements from validated tools (EQ\u20105D; EQ\u2010VAS) and was distributed via participating treatment centres.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Five hundred and ninety\u2010nine PWH responded, 91% aged\u00a0&gt;\u00a018. 81% used factor prophylactically or on demand. More pain was reported by those treated on demand versus prophylaxis particularly in those who reported daily pain. 65% reported \u2018problem joints\u2019 based on individual impact rather than medically defined \u2018target joints\u2019, 2\/3 reported multiple joint issues. The ankle was most commonly affected. 59% reported frequent pain, with 56% aware of pain constantly or most of the time and were more likely to report less favourable EQ\u20105D or EQ\u2010VAS scores (<jats:italic>p<\/jats:italic>\u00a0&lt;\u00a0.001). Pain frequency\/awareness was consistent across all severities. Most discussed pain with care teams, 31% only when asked; 25% did not discuss it. Pain discussions resulted in physiotherapy referral (63%) analgesia prescription (48%), and a minority specialist pain referral (9%). Most felt well supported with regard to their pain, but 70% reported learning to live with it.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Pain affects PWH of all ages and severities even in a well\u2010resourced country significantly impacting quality of life. Clinicians must be more aware of chronic pain in PWH. Biopsychosocial approaches to pain assessment and management are recommended.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.14860","type":"journal-article","created":{"date-parts":[[2023,9,11]],"date-time":"2023-09-11T11:20:32Z","timestamp":1694431232000},"page":"1509-1518","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":10,"title":["Prevalence and perceptions of pain in people with haemophilia: A UK study"],"prefix":"10.1111","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2001-5958","authenticated-orcid":false,"given":"Kate","family":"Khair","sequence":"first","affiliation":[{"name":"Haemnet  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5962-7647","authenticated-orcid":false,"given":"Paul","family":"McLaughlin","sequence":"additional","affiliation":[{"name":"Katharine Dormandy Haemophilia Centre and Thrombosis Unit Royal Free Hospital  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7409-878X","authenticated-orcid":false,"given":"Nathalie","family":"Roussel","sequence":"additional","affiliation":[{"name":"Department of Rehabilitation Sciences and Physiotherapy (MOVANT) Faculty of Medicine and Health Sciences University of Antwerp Campus Drie Eiken  Antwerp Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Matthew","family":"Boyton","sequence":"additional","affiliation":[{"name":"Haemnet  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mike","family":"Holland","sequence":"additional","affiliation":[{"name":"Haemnet  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,9,11]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/9780470693872"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12023"},{"key":"e_1_2_9_4_1","volume-title":"Classification of Chronic Pain","author":"Merskey H","year":"1994"},{"key":"e_1_2_9_5_1","volume-title":"Pain: Clinical Manual for Nursing Practice","author":"McCaffery M","year":"1989"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365\u20102516.2006.01203.x"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365\u20102516.2011.02709.x"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12239"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.13214"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1093\/pm\/pny309"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.2147\/PPA.S87659"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023\u2010021\u201002152\u20101"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.17225\/jhp00018"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.13323"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12765"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.13600"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14046"},{"key":"e_1_2_9_18_1","doi-asserted-by":"crossref","unstructured":"World Health Organization.Cancer pain relief (PDF) (1 ed.). 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