Document Detail

Assessment of outcomes.
MedLine Citation:
PMID:  24762286     Owner:  NLM     Status:  In-Data-Review    
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.
V S Blanchette; B O'Mahony; L McJames; J N Mahlangu
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Publication Detail:
Type:  Journal Article    
Journal Detail:
Title:  Haemophilia : the official journal of the World Federation of Hemophilia     Volume:  20 Suppl 4     ISSN:  1365-2516     ISO Abbreviation:  Haemophilia     Publication Date:  2014 May 
Date Detail:
Created Date:  2014-04-25     Completed Date:  -     Revised Date:  -    
Medline Journal Info:
Nlm Unique ID:  9442916     Medline TA:  Haemophilia     Country:  England    
Other Details:
Languages:  eng     Pagination:  114-20     Citation Subset:  IM    
Copyright Information:
© 2014 John Wiley & Sons Ltd.
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