{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,10]],"date-time":"2026-06-10T19:56:31Z","timestamp":1781121391497,"version":"3.54.1"},"reference-count":35,"publisher":"MDPI AG","issue":"7","license":[{"start":{"date-parts":[[2024,6,25]],"date-time":"2024-06-25T00:00:00Z","timestamp":1719273600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Swedish Orphan Biovitrum S.L USA","award":["."],"award-info":[{"award-number":["."]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Pharmaceuticals"],"abstract":"<jats:p>(1) Background: Hemophilia is a bleeding disorder characterized by hemarthrosis. Prophylaxis is the gold standard for bleeding prevention. Extended half-life (EHL) recombinant FVIII replacement products have shown to be associated with low bleeding rates. The aim was to evaluate the efficacy of EHL prophylaxis in improving perceived quality of life, adherence to treatment, and kinesiophobia in patients with hemophilia. (2) Methods: This was a prospective cohort study. Forty-six patients from different regions, who had started EHL FVIII concentrate prophylactic treatment, were evaluated at baseline and at 12-month follow-up. The study variables were as follows: perceived quality of life (36-Item Short Form Health Survey), adherence to treatment (Validated Hemophilia Regimen Treatment Adherence Scale\u2014Prophylaxis), and kinesiophobia (Tampa Scale of Kinesiophobia). (3) Results: There were statistically significant differences in the domains Role-Physical (p &lt; 0.001), Bodily Pain (p &lt; 0.001), Role-Emotional (p &lt; 0.001), Vitality (p = 0.04), and Social Functioning (p = 0.01) and the total scores, Physical Health (p &lt; 0.001) and Mental Health (p &lt; 0.001) on perceived quality of life. There were significant differences in the domains Skipping (p &lt; 0.01), Communicating (p &lt; 0.001), and the total score (p = 0.01) in terms of adherence. There were also significant differences in kinesiophobia (p = 0.02) after the study period. (4) Conclusions: EHL prophylaxis can improve the perceived quality of life of people with hemophilia. This prophylactic regimen, which requires fewer infusions, may improve adherence to treatment in adult patients with hemophilia over a 12-month period. The administration of extended half-life factor VIII concentrates can reduce kinesiophobia in adult patients with hemophilic arthropathy.<\/jats:p>","DOI":"10.3390\/ph17070835","type":"journal-article","created":{"date-parts":[[2024,6,28]],"date-time":"2024-06-28T03:42:30Z","timestamp":1719546150000},"page":"835","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Changes in Quality of Life, Adherence, and Kinesiophobia in Patients with Hemophilia Treated with Extended Half-Life Treatment: Final Results of the LongHest Project"],"prefix":"10.3390","volume":"17","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2143-8477","authenticated-orcid":false,"given":"Roberto","family":"Ucero-Lozano","sequence":"first","affiliation":[{"name":"Department of Physiotherapy, European University of Madrid, 28670 Madrid, Spain"},{"name":"InHeFis Research Group, Instituto Asturiano de Investigaci\u00f3n Sanitaria (ISPA), 33011 Oviedo, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ra\u00fal","family":"P\u00e9rez-Llanes","sequence":"additional","affiliation":[{"name":"InHeFis Research Group, Instituto Asturiano de Investigaci\u00f3n Sanitaria (ISPA), 33011 Oviedo, Spain"},{"name":"Department of Physiotherapy, University of Murcia, 30100 Murcia, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4276-6982","authenticated-orcid":false,"given":"Rub\u00e9n","family":"Cuesta-Barriuso","sequence":"additional","affiliation":[{"name":"InHeFis Research Group, Instituto Asturiano de Investigaci\u00f3n Sanitaria (ISPA), 33011 Oviedo, Spain"},{"name":"Department of Surgery and Medical-Surgical Specialties, University of Oviedo, 33003 Oviedo, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elena","family":"Donoso-\u00dabeda","sequence":"additional","affiliation":[{"name":"InHeFis Research Group, Instituto Asturiano de Investigaci\u00f3n Sanitaria (ISPA), 33011 Oviedo, Spain"},{"name":"Department of Physiotherapy, Catholic University San Antonio-UCAM, 30107 Murcia, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2024,6,25]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"100582","DOI":"10.1016\/j.blre.2019.05.006","article-title":"The Central Role of Thrombin in Bleeding Disorders","volume":"38","author":"Negrier","year":"2019","journal-title":"Blood Rev."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"1737","DOI":"10.1016\/j.jtha.2023.03.016","article-title":"Reclassifying Hemophilia to Include the Definition of Outcomes and Phenotype as New Targets","volume":"21","author":"Thachil","year":"2023","journal-title":"J. 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