2016
DOI: 10.1111/hae.13088
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Choosing outcome assessment tools in haemophilia care and research: a multidisciplinary perspective

Abstract: Introduction:The implementation of early long-term, regular clotting factor concentrate (CFC) replacement therapy ('prophylaxis') has made it possible to offer boys with haemophilia a near normal life. Many different regimens have reported favourable results, but the optimum treatment regimens have not been established and the cost of prophylaxis is very high. Both for optimizing treatment and reimbursement issues, there is a need to provide objective evidence of both short-and long-term results and benefits o… Show more

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Cited by 69 publications
(116 citation statements)
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“…2 It was directly derived from the Haemophilia Activities List for adults 3,4 and subsequently validated. 6 Regular outcome assessment should be part of regular care. The pedHAL is recommended for both research purposes and clinical management of individual patients.…”
Section: Introductionmentioning
confidence: 99%
“…2 It was directly derived from the Haemophilia Activities List for adults 3,4 and subsequently validated. 6 Regular outcome assessment should be part of regular care. The pedHAL is recommended for both research purposes and clinical management of individual patients.…”
Section: Introductionmentioning
confidence: 99%
“…However, early joint alterations remain undetected on the Pettersson score as X‐ray only shows osteochondral changes . Furthermore, in a paediatric population, the WFH physical examination score is less sensitive than the Haemophilia Joint Health Score (HJHS), which was developed more recently and is the recommended tool for routine patient follow‐up assessments of joint health . The WFH guidelines recommend annual use of the HJHS during regular evaluations, although assessment must be performed by a trained physiotherapist and is time consuming.…”
Section: Introductionmentioning
confidence: 99%
“…10 Limited research has focussed on OM for recovery from acute bleeds or more generally for haemophilia. 10 Limited research has focussed on OM for recovery from acute bleeds or more generally for haemophilia.…”
Section: Discussionmentioning
confidence: 99%