Development of ICF Core Sets for Inflammatory Bowel Diseases
Aim of the project was to develop ICF Core Sets for Inflammatory Bowel Diseases (IBD). The project followed three phases. In the preparatory phase of the project four studies were carried out: (1) a systematic literature review to identify outcome measures in studies published from 1999-2009 focusing on persons with IBD, (2) a qualitative study including persons with IBD, (3) an internet-based international expert survey including different health professions, and (4) a multicentre cross-sectional study performed at three study centres in France. In Phase I of the project the information collected from these preparatory studies was presented at the international consensus conference in June 2010. At this consensus conference, 20 IBD experts from 7 health professions (gastroenterologists, colorectal surgeons, clinical psychologists, stoma therapists, nurses, dieticians and social workers) and from 17 countries decided which ICF categories are to be included in the Comprehensive and Brief ICF Core Sets for IBD. In Phase 2 the ICF Core Sets for IBD formed the basis for the development of the “Inflammatory Bowel Diseases Functioning Index”. This index was tested and validated in a European multicenter study.
The project was a collaboration effort of the International Program to develop New Indexes in Crohn’s disease (IPNIC) and the Chair for Public Health and Health Services Research, LMU Munich.
Data of the qualitative study was collect in cooperation with the Mayo Clinic, Rochester, Minnesota (United States of America). The empirical study was performed at the Department of Hepatogastroenterology, Centre Hospitalier Universitaire de Nancy, Vandoeuvre-Lès-Nancy (France), the Department of Hepatogastroenterology, Hôpital Huriez, Centre Hospitalier Universitaire, Lille (France) and the Department of Hepatogastroenterology, Hôpital Saint-Louis, Paris (France).
08/2009 – 09/2010
INTEST-INFO for the International Program to develop New Indexes in Crohn’s disease (IPNIC)
Prof. Dr. Alarcos Cieza, MPH
Dr. Michaela Coenen, MPH