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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
(författare)
Quality of life in a large multinational haemophilia B cohort (The B-Natural study) – Unmet needs remain
- Artikel/kapitelEngelska2022
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Nummerbeteckningar
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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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Språk:engelska
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Sammanfattning på:engelska
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Ämneskategori:art swepub-publicationtype
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Ämneskategori:ref swepub-contenttype
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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.
Ämnesord och genrebeteckningar
Biuppslag (personer, institutioner, konferenser, titlar ...)
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LeBeau, PetraRho, Inc.
(författare)
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Ragni, Margaret V.University of Pittsburgh
(författare)
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Borhany, Munira
(författare)
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Abajas, Yasmina L.University of North Carolina
(författare)
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Tarantino, Michael D.
(författare)
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Holstein, KatharinaUniversity Medical Center Hamburg-Eppendorf
(författare)
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Croteau, Stacy E.Boston Children's Hospital
(författare)
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Liesner, RainaGreat Ormond Street Hospital
(författare)
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Tarango, CristinaUniversity of Cincinnati College of Medicine
(författare)
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Carvalho, Manuela
(författare)
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McGuinn, CatherineWeill Cornell Medical College
(författare)
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Funding, EvaCopenhagen University Hospital(Swepub:lu)ev0706fu
(författare)
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Kempton, Christine L.Emory University
(författare)
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Bidlingmaier, ChristophUniversity Hospital Munich
(författare)
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Cohen, Alice
(författare)
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Oldenburg, JohannesUniversity Hospital Bonn
(författare)
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Kearney, Susan
(författare)
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Knoll, ChristinePhoenix Children’s Hospital
(författare)
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Kuriakose, PhilipHenry Ford Health System
(författare)
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Acharya, Suchitra
(författare)
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Reiss, Ulrike M.St Jude Children´s Research Hospital, Memphis
(författare)
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Kulkarni, RoshniMichigan State University
(författare)
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Witkop, MichelleNational Hemophilia Foundation,Munson Medical Center
(författare)
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Lethagen, StefanSwedish Orphan Biovitrum(Swepub:lu)medf-sle
(författare)
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Krouse, RebeccaRho, Inc.
(författare)
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Shapiro, Amy D.
(författare)
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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
(författare)
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Klinisk koagulationsmedicin, MalmöForskargrupper vid Lunds universitet
(creator_code:org_t)
Sammanhörande titlar
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Ingår i:Haemophilia: Wiley28:3, s. 453-4611351-82161365-2516
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Berntorp, Erik
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LeBeau, Petra
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Ragni, Margaret ...
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Borhany, Munira
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Abajas, Yasmina ...
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Tarantino, Micha ...
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Holstein, Kathar ...
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Croteau, Stacy E ...
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Liesner, Raina
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Tarango, Cristin ...
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Carvalho, Manuel ...
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McGuinn, Catheri ...
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Funding, Eva
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Kempton, Christi ...
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Bidlingmaier, Ch ...
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Cohen, Alice
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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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- MEDICIN OCH HÄLSOVETENSKAP
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MEDICIN OCH HÄLS ...
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Haemophilia
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