{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,7]],"date-time":"2026-08-07T16:52:18Z","timestamp":1786121538036,"version":"build-2736575974"},"reference-count":36,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,8,6]],"date-time":"2026-08-06T00:00:00Z","timestamp":1785974400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2026,8,6]],"date-time":"2026-08-06T00:00:00Z","timestamp":1785974400000},"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"],"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Real\u2010world data on health\u2010related quality of life (HRQoL) and its predictors in people with haemophilia (PWH) are crucial to evaluate the effect of comprehensive management. It may be useful for clinicians and interdisciplinary teams to better target their interventions. We aimed to characterise global HRQoL and its associated factors in PWH within the Colombian health system.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A cross\u2010sectional study on PWH included in the Colombian Registry of Haemophilia and other Coagulopathies (CRHOC) from November 2021 to April 2022. Global HRQoL was measured using culturally validated versions of HemoLatin\u2010QoL (adults) and CHO\u2010KLAT 2.0 in children and their parents. A descriptive analysis and simple and multiple linear regressions were used to identify the factors associated with global HRQoL.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Five hundred and eighty\u2010three participants were analysed (452 adults and 131 children). A total of 93% were men with a median age of 36 years (IQR: 27\u201351) in adults and 12 years (IQR: 9\u201315) in children. Most people were affiliated with the contributory insurance scheme, 98% of children were students, and 63% of adults were employed. A total of 79% had haemophilia A, 44% of adults and 63% of children had a severe form, and prophylaxis was the most used treatment. Median HRQoL was 83 points (IQR: 65\u201395) in adults and 72 points (IQR: 63\u201381) in children. In both subpopulations, experiencing pain, haemarthrosis and belonging to the subsidised insurance scheme worsened HRQoL. In adults, higher education, being employed or a student, physical activity, and being treated with Emicizumab significantly improved HRQoL. Prophylaxis had a significant protective effect in adults with severe disease.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Pain, haemarthrosis and being affiliated with the subsidised scheme negatively modified HRQoL in adults and children. Prophylaxis improved HRQoL in severe cases. These findings help clinicians to better focus interdisciplinary management according to patient self\u2010reported outcomes.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70348","type":"journal-article","created":{"date-parts":[[2026,8,7]],"date-time":"2026-08-07T05:19:28Z","timestamp":1786079968000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Quality of Life in People With Haemophilia: Results in the Framework of a Nationwide Registry in Colombia"],"prefix":"10.1111","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6183-252X","authenticated-orcid":false,"given":"Juliana Alexandra","family":"Hern\u00e1ndez Vargas","sequence":"first","affiliation":[{"name":"Cuenta de Alto Costo Fondo Colombiano de Enfermedades de Alto Costo  Bogot\u00e1 Colombia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adriana","family":"Linares","sequence":"additional","affiliation":[{"name":"Fundaci\u00f3n Hospital de La Misericordia  Bogot\u00e1 Colombia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mar\u00eda Helena","family":"Solano","sequence":"additional","affiliation":[{"name":"Hospital De San Jos\u00e9 Fundaci\u00f3n Universitaria de Ciencias de la Salud  Bogot\u00e1 Colombia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudia","family":"Casas","sequence":"additional","affiliation":[{"name":"Hospital De San Jos\u00e9 Fundaci\u00f3n Universitaria de Ciencias de la Salud  Bogot\u00e1 Colombia"},{"name":"Cl\u00ednica Infantil Colsubsidio  Bogot\u00e1 Colombia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ginna Paola","family":"Fern\u00e1ndez Deaza","sequence":"additional","affiliation":[{"name":"Cuenta de Alto Costo Fondo Colombiano de Enfermedades de Alto Costo  Bogot\u00e1 Colombia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lizbeth","family":"Acu\u00f1a","sequence":"additional","affiliation":[{"name":"Cuenta de Alto Costo Fondo Colombiano de Enfermedades de Alto Costo  Bogot\u00e1 Colombia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,8,6]]},"reference":[{"issue":"6","key":"e_1_2_12_2_1","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1111\/hae.14046","article-title":"WFH Guidelines for the Management of Hemophilia, 3rd Edition","volume":"26","author":"Srivastava A.","year":"2020","journal-title":"Haemophilia"},{"issue":"2","key":"e_1_2_12_3_1","doi-asserted-by":"crossref","first-page":"85","DOI":"10.17533\/udea.rfnsp.v36n2a11","article-title":"Hemofilia: Abordaje Diagn\u00f3stico y Terap\u00e9utico","volume":"36","author":"Mart\u00ednez\u2010S\u00e1nchez L. M.","year":"2018","journal-title":"Revista Facultad Nacional de Salud P\u00fablica"},{"issue":"5","key":"e_1_2_12_4_1","doi-asserted-by":"crossref","first-page":"815","DOI":"10.1177\/1076029617733041","article-title":"Health\u2010Related Quality of Life and Association With Arthropathy in Greek Patients With Hemophilia","volume":"24","author":"Varaklioti A.","year":"2018","journal-title":"Clinical and Applied Thrombosis\/Hemostasis"},{"key":"e_1_2_12_5_1","volume-title":"Report on the Annual Global Survey 2023 [Internet]","author":"World Federation of Hemophilia (WFH)","year":"2024"},{"key":"e_1_2_12_6_1","unstructured":"Fondo Colombiano de Enfermedades de Alto Costo (CAC).Situaci\u00f3n de la Hemofilia y otras Coagulopat\u00edas en Colombia 2023 [Internet](Fondo Colombiano de Enfermedades de Alto Costo 2023) [cited 2025 Feb 9] https:\/\/cuentadealtocosto.org\/wp-content\/uploads\/2024\/12\/situacion-de-la-hemofilia-y-otras-coagulopatias-en-colombia-2023.pdf."},{"key":"e_1_2_12_7_1","doi-asserted-by":"crossref","unstructured":"F.Boehlen L.Graf andE.Berntorp \u201cOutcome Measures in Haemophilia: A Systematic Review \u201dEuropean Journal of Haematology 93 no. 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An Observational Study","volume":"22","author":"Ucero\u2010Lozano R.","year":"2021","journal-title":"BMC Musculoskeletal Disorders"},{"key":"e_1_2_12_26_1","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1177\/20406207221079482","article-title":"Improvement in Pain\u2010Related Quality of Life in Patients With Hemophilia A Treated With rFVIIIFc Individualized Prophylaxis: Post Hoc Analysis From the A\u2010LONG Study","volume":"13","author":"Pasi J.","year":"2022","journal-title":"Therapeutic Advances in Hematology"},{"issue":"1","key":"e_1_2_12_27_1","doi-asserted-by":"crossref","first-page":"12","DOI":"10.1186\/s13047-023-00611-5","article-title":"Decline in Health\u2010Related Quality of Life and Foot and Ankle Patient Reported Outcomes Measures in Patients With Haemophilia and Ankle Haemarthropathy","volume":"16","author":"Wilkins R. 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C.","year":"2020","journal-title":"Pain Medicine"},{"key":"e_1_2_12_29_1","doi-asserted-by":"crossref","first-page":"436","DOI":"10.1515\/sjpain-2021-0158","article-title":"Prevalence of Pain in Adult Patients With Moderate to Severe Haemophilia: A Systematic Review","volume":"22","author":"Ransmann P.","year":"2022","journal-title":"Scandinavian Journal of Pain"},{"key":"e_1_2_12_30_1","doi-asserted-by":"crossref","first-page":"1042","DOI":"10.1007\/s00508-020-01798-4","article-title":"Pain Management in Hemophilia: Expert Recommendations","volume":"133","author":"Stromer W.","year":"2021","journal-title":"Wiener Klinische Wochenschrift"},{"key":"e_1_2_12_31_1","doi-asserted-by":"crossref","DOI":"10.1016\/j.blre.2021.100885","article-title":"Improving Assessment and Management of Pain in Hemophilia: An Italian Delphi Consensus Statement","volume":"51","author":"Santoro C.","year":"2022","journal-title":"Blood Reviews"},{"key":"e_1_2_12_32_1","first-page":"1","article-title":"Factor VIII Replacement Prophylaxis in Patients With Hemophilia A Transitioning to Adults: A Systematic Literature Review","volume":"16","author":"Sun J.","year":"2021","journal-title":"Orphanet Journal of Rare Diseases"},{"issue":"1","key":"e_1_2_12_33_1","doi-asserted-by":"crossref","first-page":"S53","DOI":"10.1007\/s10198-016-0785-2","article-title":"Social\/Economic Costs and Quality of Life in Patients With Haemophilia in Europe","volume":"17","author":"Cavazza M.","year":"2016","journal-title":"European Journal of Health Economics"},{"key":"e_1_2_12_34_1","doi-asserted-by":"crossref","first-page":"376","DOI":"10.1111\/hae.12321","article-title":"Social Determinants and Health\u2010Related Dimensions of Quality of Life in Adult Patients With Haemophilia","volume":"20","author":"Dolatkhah R.","year":"2014","journal-title":"Haemophilia"},{"key":"e_1_2_12_35_1","doi-asserted-by":"crossref","first-page":"194","DOI":"10.1111\/hae.12031","article-title":"Haemophilia & Exercise Project (HEP): The impact of 1\u2010Year Sports Therapy Programme on Physical Performance in Adult Haemophilia Patients","volume":"19","author":"Czepa D.","year":"2013","journal-title":"Haemophilia"},{"key":"e_1_2_12_36_1","doi-asserted-by":"crossref","first-page":"487","DOI":"10.1111\/hae.12118","article-title":"The Benefits of Exercise for Patients With Haemophilia and Recommendations for Safe and Effective Physical Activity","volume":"19","author":"Negrier C.","year":"2013","journal-title":"Haemophilia"},{"key":"e_1_2_12_37_1","doi-asserted-by":"crossref","first-page":"1383","DOI":"10.1111\/hae.15090","article-title":"Differences and Similarities in Patient\u2010Reported Outcomes Among Men and Women With Haemophilia","volume":"30","author":"Kempton C. 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