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Quality of life in ...
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Berntorp, ErikLund University,Lunds universitet,Klinisk koagulationsmedicin, Malmö,Forskargrupper vid Lunds universitet,Clinical Coagulation, Malmö,Lund University Research Groups
(author)
Quality of life in a large multinational haemophilia B cohort (The B-Natural study) – Unmet needs remain
- Article/chapterEnglish2022
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LIBRIS-ID:oai:lup.lub.lu.se:a7d265d1-469c-4e85-bd8d-3d5be862a6f5
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https://lup.lub.lu.se/record/a7d265d1-469c-4e85-bd8d-3d5be862a6f5URI
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https://doi.org/10.1111/hae.14525DOI
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Language:English
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Summary in:English
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Introduction: The B-Natural study is a multicentre, multinational, observational study of haemophilia B (HB) designed to increase understanding of clinical manifestations, treatment and quality of life (QoL). Aim: To characterise and compare QoL in HB across disease severity groups and individuals with inhibitors to identify gaps in treatment. Methods: A total of 224 individuals from 107 families were enrolled from a total of 24 centres in North America (n = 16), Europe (n = 7) and Asia (n = 1). Of these, 68 (30.4%) subjects had severe (<1 IU/dL), median age 15.6 years, 114 (50.9%) moderate (1–5 IU/dL), age 13.3 years, and 42 (18.8%) mild (>5–< 40 IU/dL), age 12.1 years, disease. Twenty-nine participants had inhibitors or a history of inhibitors. Three versions of the EQ-5D instrument were used as a measure of QoL: proxy (ages 4–7), youth (ages 8–15) and self (age 16+). Each instrument included a visual analogue scale ranging from 100 (best health) to 0 (worst health) to assess current day's health (EQ VAS). Range-of-motion (ROM) for elbows, knees and ankles was assessed using a four-point scale, from which a composite score was calculated. Results: In all severity groups, a proportion of subjects showed less than optimal QoL. The majority of the mild and moderate severe participants reported a normal EQ-5D health profile (79% and 72%, respectively), whereas about half (47%) of the severe participants and only 13% of the inhibitor participants reported this profile. Conclusion: The B-Natural study reveals impacted QoL in all disease severities of HB including those with inhibitors. Unmet needs remain and include nonsevere HB.
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LeBeau, PetraRho, Inc.
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Ragni, Margaret V.University of Pittsburgh
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Borhany, Munira
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Abajas, Yasmina L.University of North Carolina
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Tarantino, Michael D.
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Holstein, KatharinaUniversity Medical Center Hamburg-Eppendorf
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Croteau, Stacy E.Boston Children's Hospital
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Liesner, RainaGreat Ormond Street Hospital
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Tarango, CristinaUniversity of Cincinnati College of Medicine
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Carvalho, Manuela
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McGuinn, CatherineWeill Cornell Medical College
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Funding, EvaCopenhagen University Hospital(Swepub:lu)ev0706fu
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Kempton, Christine L.Emory University
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Bidlingmaier, ChristophUniversity Hospital Munich
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Cohen, Alice
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Oldenburg, JohannesUniversity Hospital Bonn
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Kearney, Susan
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Knoll, ChristinePhoenix Children’s Hospital
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Kuriakose, PhilipHenry Ford Health System
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Acharya, Suchitra
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Reiss, Ulrike M.St Jude Children´s Research Hospital, Memphis
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Kulkarni, RoshniMichigan State University
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Witkop, MichelleNational Hemophilia Foundation,Munson Medical Center
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Lethagen, StefanSwedish Orphan Biovitrum(Swepub:lu)medf-sle
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Krouse, RebeccaRho, Inc.
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Shapiro, Amy D.
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Astermark, JanLund University,Lunds universitet,Klinisk koagulationsmedicin, Malmö,Forskargrupper vid Lunds universitet,Clinical Coagulation, Malmö,Lund University Research Groups,Skåne University Hospital(Swepub:lu)medf-jas
(author)
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Klinisk koagulationsmedicin, MalmöForskargrupper vid Lunds universitet
(creator_code:org_t)
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In:Haemophilia: Wiley28:3, s. 453-4611351-82161365-2516
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LeBeau, Petra
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Holstein, Kathar ...
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Liesner, Raina
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Funding, Eva
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Kempton, Christi ...
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Oldenburg, Johan ...
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Kearney, Susan
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Knoll, Christine
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Kuriakose, Phili ...
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Acharya, Suchitr ...
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Reiss, Ulrike M.
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Kulkarni, Roshni
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Witkop, Michelle
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Lethagen, Stefan
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Krouse, Rebecca
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Shapiro, Amy D.
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Astermark, Jan
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Haemophilia
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