Assessment of outcomes

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You have free access to this contentAssessment of outcomesV. S. Blanchette1, B. O’Mahony2, L. McJames3 andJ. N. Mahlangu4,*Article first published online: 25 APR 2014

DOI: 10.1111/hae.12426

© 2014 John Wiley & Sons Ltd

Issue

HaemophiliaSpecial Issue: State of the Art: WFH 2014 World Congress

Volume 20, Issue Supplement s4, pages 114–120, May 2014

Additional Information

How to CiteBlanchette, V. S., O’Mahony, B., McJames, L. and Mahlangu, J. N. (2014), Assessment of outcomes. Haemophilia, 20: 114–120. doi: 10.1111/hae.12426

Author Information1

Division of Hematology/Oncology, Department of Pediatrics, University of Toronto, Hospital for Sick Children, Toronto, ON, Canada

2

European Haemophilia Consortium, Irish Haemophilia Society, Cumann Haemifile Na hEireann, Dublin 8, Ireland

3

National Blood Authority, Lyneham, NSW, Australia

4

Division of Molecular Medicine and Haematology, Faculty of Health Sciences, NHLS and University of the Witwatersrand, Parktown, Johannesburg, South Africa

* Correspondence: Johnny N. Mahlangu, Division of Molecular Medicine and Haematology, Faculty of Health Sciences, NHLS and University of the Witwatersrand, 7 York Road, Parktown, 2193 Johannesburg, South Africa.
Tel.: +27 114898413; fax: +27 8606026416;
e-mail: johnny.mahlangu@nhls.ac.za

Publication HistoryIssue published online: 25 APR 2014Article first published online: 25 APR 2014Manuscript Accepted: 5 MAR 2014 SEARCH Search Scope All contentPublication titlesIn this journalIn this issue Search String Advanced >Saved Searches > SEARCH BY CITATION Volume: Issue: Page: ARTICLE TOOLSGet PDF (137K)Save to My ProfileE-mail Link to this ArticleExport Citation for this ArticleGet Citation AlertsRequest Permissions AbstractArticleReferencesCited By View Full Article (HTML) Enhanced Article (HTML) Get PDF (137K) Keywords:assessment;hemophilia;outcome;reviewSummary

Effective healthcare delivery necessitates evaluation of the effect of interventions in the form of outcome assessment. Treatment effect includes measurement of how the patient feels, functions and survives following healthcare interventions. In haemophilia, which is a rare bleeding disorder, outcome assessment was characterized by a lack of validated outcome measurement tools and the challenges of hemophilia study design to collect outcome data. The aim of this communication is to share current thinking and, through practical examples, provide a state of the art practice in the assessment of hemophilia outcomes from a healthcare provider, patient/family and funder perspective. This discussion is timely and particularly relevant to the care of people with hemophilia on the eve of a number of novel hemophilia treatment products which are about to be licensed for use, specifically the long-acting factor VIII and factor IX concentrates. The first section by Dr Blanchet gives an overview of the tools currently available for assessment of structure/function, patient activities and patient participation in hemophilia healthcare delivery, pointing out the challenge of developing new tools and appropriate validation of currently available tools. The second section by Mr Brian O'Mahony emphasizes the essential collaboration and partnership between healthcare providers and people with hemophilia in collating the outcome data. In the third and final section, Mr Leigh McJames, gives a funder's perspective of the desirable outcomes of hemophilia care.

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