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WFRF:(Tarantino Michael D.)
 

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LIBRIS Formathandbok  (Information om MARC21)
FältnamnIndikatorerMetadata
00005177naa a2200685 4500
001oai:lup.lub.lu.se:a7d265d1-469c-4e85-bd8d-3d5be862a6f5
003SwePub
008220422s2022 | |||||||||||000 ||eng|
0247 a https://lup.lub.lu.se/record/a7d265d1-469c-4e85-bd8d-3d5be862a6f52 URI
0247 a https://doi.org/10.1111/hae.145252 DOI
040 a (SwePub)lu
041 a engb eng
042 9 SwePub
072 7a art2 swepub-publicationtype
072 7a ref2 swepub-contenttype
1001 a Berntorp, Eriku Lund University,Lunds universitet,Klinisk koagulationsmedicin, Malmö,Forskargrupper vid Lunds universitet,Clinical Coagulation, Malmö,Lund University Research Groups4 aut0 (Swepub:lu)medf-ebe
2451 0a Quality of life in a large multinational haemophilia B cohort (The B-Natural study) – Unmet needs remain
264 c 2022-03-08
264 1b Wiley,c 2022
520 a 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.
650 7a MEDICIN OCH HÄLSOVETENSKAPx Klinisk medicinx Kardiologi0 (SwePub)302062 hsv//swe
650 7a MEDICAL AND HEALTH SCIENCESx Clinical Medicinex Cardiac and Cardiovascular Systems0 (SwePub)302062 hsv//eng
653 a EQ-5D
653 a FIX
653 a haemophilia B
653 a inhibitor
653 a prophylaxis
653 a QoL
7001 a LeBeau, Petrau Rho, Inc.4 aut
7001 a Ragni, Margaret V.u University of Pittsburgh4 aut
7001 a Borhany, Munira4 aut
7001 a Abajas, Yasmina L.u University of North Carolina4 aut
7001 a Tarantino, Michael D.4 aut
7001 a Holstein, Katharinau University Medical Center Hamburg-Eppendorf4 aut
7001 a Croteau, Stacy E.u Boston Children's Hospital4 aut
7001 a Liesner, Rainau Great Ormond Street Hospital4 aut
7001 a Tarango, Cristinau University of Cincinnati College of Medicine4 aut
7001 a Carvalho, Manuela4 aut
7001 a McGuinn, Catherineu Weill Cornell Medical College4 aut
7001 a Funding, Evau Copenhagen University Hospital4 aut0 (Swepub:lu)ev0706fu
7001 a Kempton, Christine L.u Emory University4 aut
7001 a Bidlingmaier, Christophu University Hospital Munich4 aut
7001 a Cohen, Alice4 aut
7001 a Oldenburg, Johannesu University Hospital Bonn4 aut
7001 a Kearney, Susan4 aut
7001 a Knoll, Christineu Phoenix Children’s Hospital4 aut
7001 a Kuriakose, Philipu Henry Ford Health System4 aut
7001 a Acharya, Suchitra4 aut
7001 a Reiss, Ulrike M.u St Jude Children´s Research Hospital, Memphis4 aut
7001 a Kulkarni, Roshniu Michigan State University4 aut
7001 a Witkop, Michelleu National Hemophilia Foundation,Munson Medical Center4 aut
7001 a Lethagen, Stefanu Swedish Orphan Biovitrum4 aut0 (Swepub:lu)medf-sle
7001 a Krouse, Rebeccau Rho, Inc.4 aut
7001 a Shapiro, Amy D.4 aut
7001 a Astermark, Janu Lund University,Lunds universitet,Klinisk koagulationsmedicin, Malmö,Forskargrupper vid Lunds universitet,Clinical Coagulation, Malmö,Lund University Research Groups,Skåne University Hospital4 aut0 (Swepub:lu)medf-jas
7102 a Klinisk koagulationsmedicin, Malmöb Forskargrupper vid Lunds universitet4 org
7730 t Haemophiliad : Wileyg 28:3, s. 453-461q 28:3<453-461x 1351-8216x 1365-2516
8564 u http://dx.doi.org/10.1111/hae.14525x freey FULLTEXT
8564 8u https://lup.lub.lu.se/record/a7d265d1-469c-4e85-bd8d-3d5be862a6f5
8564 8u https://doi.org/10.1111/hae.14525

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