{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T05:38:25Z","timestamp":1790314705964,"version":"4.1.0"},"reference-count":25,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2021,11,10]],"date-time":"2021-11-10T00:00:00Z","timestamp":1636502400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2022,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Recurrent bleeding in severe haemophilia B causes painful hemarthroses and reduces capacity for physical activity. Recombinant factor IX Fc fusion protein (rFIXFc) prophylaxis results in low annualised bleeding rates, with the potential to improve patients\u2019 health\u2010related quality of life (HRQoL).<\/jats:p><\/jats:sec><jats:sec><jats:title>Aim<\/jats:title><jats:p>To present a post hoc analysis of data from B\u2010LONG describing change over time in patient\u2010reported outcomes associated with pain and physical activity.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Patients (\u226512 years) who received weekly dose\u2010adjusted or interval\u2010adjusted rFIXFc prophylaxis and completed the Haemophilia\u2010Specific QoL questionnaire for adolescents (Haemo\u2010QoL) or adults (Haem\u2010A\u2010QoL) at baseline (BL) and end of study (EoS). Individual level changes in items of the \u2018Physical Health\u2019 and \u2018Sports and Leisure\u2019 domains, categorised as \u2018never\/rarely\/seldom\u2019 or \u2018sometimes\/often\/all the time\u2019, were analysed using McNemar's test to compare distribution of responses at EoS versus BL.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>At EoS versus BL, a significantly greater proportion of patients did not experience painful swellings (64%\u00a0vs. 44%; <jats:italic>P\u00a0=\u00a0<\/jats:italic>.004), painful joints (44%\u00a0vs. 28%; <jats:italic>P\u00a0=\u00a0<\/jats:italic>.003) or pain when moving (54%\u00a0vs. 41%; <jats:italic>P\u00a0=\u00a0<\/jats:italic>.026). Additionally, at EoS versus BL, patients were less likely to avoid participating in sports like football (30%\u00a0vs. 8%; <jats:italic>P\u00a0=\u00a0<\/jats:italic>.002), avoid sports due to their haemophilia (47%\u00a0vs. 27%; <jats:italic>P\u00a0=\u00a0<\/jats:italic>.007), or experience difficulty walking as far as they wanted (63%\u00a0vs. 43%; <jats:italic>P\u00a0=\u00a0<\/jats:italic>.001). The proportion of patients who played sports as much as the general population was numerically increased (52%\u00a0vs. 37%; <jats:italic>P\u00a0=\u00a0<\/jats:italic>.033) at EoS versus BL.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Results of the analysis suggest that over time, rFIXFc prophylaxis is associated with significant improvements in pain and physical functioning. This contributes to previous evidence of overall HRQoL improvements in patients with haemophilia B treated with rFIXFc.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.14455","type":"journal-article","created":{"date-parts":[[2021,11,11]],"date-time":"2021-11-11T03:23:42Z","timestamp":1636601022000},"page":"18-26","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["rFIXFc prophylaxis improves pain and levels of physical activity in haemophilia B: Post hoc analysis of B\u2010LONG using haemophilia\u2010specific quality of life questionnaires"],"prefix":"10.1111","volume":"28","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8500-2483","authenticated-orcid":false,"given":"Jan","family":"Astermark","sequence":"first","affiliation":[{"name":"Department of Translational Medicine Lund University  Malm\u00f6 Sweden"},{"name":"Department of Haematology, Oncology and Radiation Physics Sk\u00e5ne University Hospital  Malm\u00f6 Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5429-8437","authenticated-orcid":false,"given":"C\u00e9dric","family":"Hermans","sequence":"additional","affiliation":[{"name":"Division of Haematology, Haemostasis and Thrombosis Unit, Saint\u2010Luc University Hospital Universit\u00e9 catholique de Louvain (UCLouvain)  Brussels Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Monia","family":"Ezzalfani","sequence":"additional","affiliation":[{"name":"Creativ\u2010Ceutical  Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Samuel","family":"Aball\u00e9a","sequence":"additional","affiliation":[{"name":"Creativ\u2010Ceutical  Rotterdam Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elena","family":"Santagostino","sequence":"additional","affiliation":[{"name":"Swedish Orphan Biovitrum AB  Basel Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zalmai","family":"Hakimi","sequence":"additional","affiliation":[{"name":"Swedish Orphan Biovitrum AB  Stockholm Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jameel","family":"Nazir","sequence":"additional","affiliation":[{"name":"Swedish Orphan Biovitrum AB  Stockholm Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,11,10]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1097\/MBC.0000000000000571"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1538-7836.2010.03962.x"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.17225\/jhp00061"},{"issue":"6","key":"e_1_2_10_5_1","first-page":"S112","article-title":"Current challenges in the management of hemophilia","volume":"21","author":"Bauer KA","year":"2015","journal-title":"Am J Manage Care"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2008.01889.x"},{"key":"e_1_2_10_7_1","volume-title":"All About Hemophilia: A Guide for Families","author":"Zourikian N","year":"2010"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12909"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1097\/MBC.0000000000000565"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.12118"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14046"},{"key":"e_1_2_10_12_1","unstructured":"Swedish Orphan Biovitrum AB. 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