{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,28]],"date-time":"2026-07-28T19:36:19Z","timestamp":1785267379587,"version":"3.55.0"},"reference-count":33,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2025,4,24]],"date-time":"2025-04-24T00:00:00Z","timestamp":1745452800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2025,4,24]],"date-time":"2025-04-24T00:00:00Z","timestamp":1745452800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"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>Background<\/jats:title>\n                    <jats:p>Physical activity is now considered generally beneficial for persons with haemophilia (PWH). However, the specific type and extent of activity and its impact on quality of life (QoL) and bleed protection during exercise is under\u2010researched. This knowledge gap should significantly impact PWH's ability to manage their condition optimally.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To explore levels of physical activity and understand bleed protection during exercise among PWH as part of the Liberate Life project.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A web\u2010based survey was conducted across eight European countries between August and September 2023. The online survey was developed by haemophilia treatment experts and patient association representatives according to the Checklist for Reporting Results of Internet E\u2010Surveys (CHERRIES) method. The 24\u2010question survey, distributed to PWH or their parents\/caregivers, covered topics such as demographics, the impact of haemophilia on daily life, bleed protection understanding and involvement in physical activities. An activity index was used to categorize PWH as \u2018more\u2019 or \u2018less\u2019 active.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Of 374 respondents analysed, PWH engagement in physical activities, mainly low\u2010impact activities like walking, swimming or cycling, was high (90.9%). Most respondents (74.9%) were \u2018less active\u2019 according to the activity index. There was a significant knowledge gap in respondents' understanding of bleed protection provided by factor and non\u2010factor therapies. Joint health (68.7%), disease severity (69.3%) and capability for physical activity (62.3%) were indicated as key variables influencing PWH QoL.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>These findings underscore the need for educational programs to improve PWH's understanding of protective factor levels and the role of non\u2010factor therapies in managing haemophilia.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70038","type":"journal-article","created":{"date-parts":[[2025,4,24]],"date-time":"2025-04-24T04:38:07Z","timestamp":1745469487000},"page":"893-902","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Physical Activity Awareness and Understanding of Treatment Protection Among People With Haemophilia and Their Caregivers in Central Europe"],"prefix":"10.1111","volume":"31","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0567-4250","authenticated-orcid":false,"given":"Angelika","family":"Batorova","sequence":"first","affiliation":[{"name":"Department of Hematology and Transfusion Medicine Faculty of Medicine of Comenius University and University Hospital Bratislava Slovakia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6148-3737","authenticated-orcid":false,"given":"Atanas","family":"Banchev","sequence":"additional","affiliation":[{"name":"Department of Pediatric Hematology and Oncology University Hospital' Tzaritza Giovanna \u2013 ISUL"},{"name":"National Hematology Hospital Sofia Bulgaria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3532-2336","authenticated-orcid":false,"given":"Ana","family":"Boban","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine University Hospital Center Zagreb Zagreb Croatia"},{"name":"School of Medicine University of Zagreb Zagreb Croatia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brigitte","family":"Brand","sequence":"additional","affiliation":[{"name":"Central Laboratory Kantonsspital Graub\u00fcnden Chur Switzerland"},{"name":"Sobi Basel Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melen","family":"Brinza","sequence":"additional","affiliation":[{"name":"Department of Hematology Fundeni Clinical Institute Bucharest Romania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Barbara Faganel","family":"Kotnik","sequence":"additional","affiliation":[{"name":"Department of Oncology and Hematology, University Children's Hospital University Medical Centre Ljubljana Ljubljana Slovenia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Csongor","family":"Kiss","sequence":"additional","affiliation":[{"name":"Division of Pediatric Hematology\/Oncology, Institute of Pediatrics Faculty of Medicine University of Debrecen Debrecen Hungary"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gediminas","family":"Puras","sequence":"additional","affiliation":[{"name":"Sobi Basel Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jan","family":"Rajnoch","sequence":"additional","affiliation":[{"name":"Sobi Prague Czech Republic"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-5430-1134","authenticated-orcid":false,"given":"Ester","family":"Zapotocka","sequence":"additional","affiliation":[{"name":"Department of Pediatric Hematology\/Oncology University Hospital Motol Prague Czech Republic"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,4,24]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14046"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/14651858.CD011180.pub2"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.2450\/2021.0138\u201021"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14282"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1093\/gerona\/56.suppl_2.13"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.2147\/cia.S44112"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1097\/00005768\u2010200009000\u201000012"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.2165\/00007256\u2010200232030\u201000001"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.6.3.e34"},{"key":"e_1_2_10_11_1","unstructured":"Public Health England.Health Matters: Physical activity\u2014Prevention and Management of Long\u2010Term Conditions. 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