Disability in inflammatory bowel diseases: developing ICF Core Sets for patients with inflammatory bowel diseases based on the International Classification of Functioning, Disability, and Health.

Department of Hepatogastroenterology, Claude Huriez Hospital, Centre Hospitalier Universitaire de Lille, Lille, France.
Inflammatory Bowel Diseases (Impact Factor: 5.12). 08/2009; 16(1):15-22. DOI: 10.1002/ibd.21010
Source: PubMed

ABSTRACT The inflammatory bowel diseases (IBDs) are associated with a reduced quality of life. The impact of IBD on disability remains largely unknown. With the International Classification of Functioning, Disability, and Health (ICF) of the World Health Organization (WHO), we can now rely on a globally agreed-upon framework and system for classifying the typical spectrum of problems in the functioning of persons with a specific disease given the environmental context in which they live. The aim of this article is to outline the methods to be utilized to develop ICF Core Sets for IBD. The project is a cooperation between the ICF Research Branch of the WHO, the IPNIC group, the International Society of Physical Rehabilitation Medicine (ISPRM), and the International Organization on Inflammatory Bowel Disease (IOIBD). Four worldwide studies will be conducted from 2009 to 2010. ICF categories relevant for IBD will be identified by systematic literature review of outcomes and measures used in IBD research, semistructured patient interviews, Internet-based expert survey, and cross-sectional study for clinical applicability. The final definition of ICF Core Sets for IBD will be determined at a Consensus Conference. Field testing will then be used to validate the ICF Core Sets. ICF Core Sets are being designed to provide useful standards for research and clinical practice. This tool will enable research that improves understanding of functioning, disability, and health in IBD, and may lead to interventions to improve and maintain functioning and minimize disability among IBD patients throughout the world.

  • Clinical gastroenterology and hepatology: the official clinical practice journal of the American Gastroenterological Association 03/2011; 9(3):211-3. · 5.64 Impact Factor
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    ABSTRACT: The Food and Drug Administration (FDA) is moving from the Crohn’s disease activity index to patient-reported outcomes (PROs) and objective measures of disease, such as findings from endoscopy. PROs will become an important aspect of assessing activity of inflammatory bowel disease (IBD) and for labelling specific drugs for this disease. PROs have always been considered in management of patients with rheumatoid arthritis or multiple sclerosis, and have included measurements of quality of life (QOL), disability, or fatigue. Several disease-specific scales have been developed to assess these PROs and commonly used in clinical trials. Outcomes reported by patients in clinical trials of IBD initially focused on QOL, measured by the Short Form 36 questionnaire or disease-specific scales such as the Inflammatory Bowel Disease Questionnaire or its shorter version. Recently considered factors include fatigue, depression and anxiety, and work productivity, measured by the Functional Assessment Chronic Illness Therapy-Fatigue, the Hospital Anxiety Depression, and the Work productivity Activity Impairment Questionnaire, respectively. However, few data are available on how treatment affects these factors in patients with IBD. Although disability is generally recognized in patients with IBD, it is not measured. The international IBD disability index is currently being validated. Importantly, none of outcomes to be reported by patients with IBD were developed according to FDA guidance for PRO development. PROs will be a major primary endpoint of future trials. FDA guidance is needed to develop additional PROs for IBD that can be incorporated into trials, to better compare patients’ experience with different therapies.
    Clinical gastroenterology and hepatology: the official clinical practice journal of the American Gastroenterological Association 01/2014; · 5.64 Impact Factor
  • Source
    Gastroenterology and Hepatology 05/2011; 7(5):324-6.

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