Content comparison of haemophilia specific patient-rated outcome measures with the international classification of functioning, disability and health (ICF, ICF-CY)

Health and Quality of Life Outcomes

Research

Edda Amann¹  Monika Bullinger²  Sylvia von Mackensen³  Silvia Riva³ 

[1] Department of Statistical Medicine and Informatics, University of Medicine, Innsbruck, Austria;Institute of Medical Psychology, Centre of Psychosocial Medicine, University Medical Centre Hamburg-Eppendorf, Germany;Institute of Medical Psychology, Centre of Psychosocial Medicine, University Medical Centre Hamburg-Eppendorf, Germany;Department of Medicine and Medical Sciences, A. Bianchi Bonomi Haemophilia and Thrombosis Centre, University of Milan and IRCCS Ca' Granda Foundation, Maggiore Hospital, Milan, Italy;

关键词: Treatment Satisfaction;    Body Structure;    Emotional Function;    HRQoL Instrument;    Meaningful Concept;   

DOI  :  10.1186/1477-7525-8-139

 received in 2010-03-04, accepted in 2010-11-25,  发布年份 2010

来源: Springer

【 摘 要 】

BackgroundPatient-Reported Outcomes (PROs) are considered important outcomes because they reflect the patient's experience in clinical trials. PROs have been included in the field of haemophilia only recently.PurposeComparing the contents of PROs measures used in haemophilia, based on the ICF/ICF-CY as frame of reference.MethodsHaemophilia-specific PROs for adults and children were selected on the grounds of international accessibility. The content of the selected instruments were examined by linking the concepts within the items of these instruments to the ICF/ICF-CY.ResultsWithin the 5 selected instruments 365 concepts were identified, of which 283 concepts were linked to the ICF/ICF CY and mapped into 70 different categories. The most frequently used categories were "b152: Emotional functions" and "e1101: Drugs".ConclusionsThe present paper provides an overview on current PROs in haemophilia and facilitates the selection of appropriate instruments for specific purposes in clinical and research settings. This work was made possible by the grant of the European Murinet Project (Multidisciplinary Research Network on Health and Disability in Europe).

【 授权许可】

CC BY   
© Riva et al; licensee BioMed Central Ltd. 2010. This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.