About 1.4 million persons in the United States and 2.2 million persons in Europe may suffer from inflammatory bowel diseases (IBD). No curative treatment is currently available for this lifelong and complex disorder, and IBD is known to influence physical, psychological, familial, and social dimensions of life. Thus, understanding IBD, its accompanying health issues and most importantly its impact on people with IBD is of upmost importance. The objective of the ICF Core Set development project for persons with IBD was to identify relevant categories which comprehensively describe the functioning of persons with IBD. The project was a collaborative effort between the ICF Research Branch, the IPNIC group (International Program to develop New Indexes for Crohn's Disease), the International Society of Physical Rehabilitation Medicine (ISPRM) and the International Organization on Inflammatory Bowel Disease (IOIBD).

The preparatory phase of the project included the following studies:

• A systematic literature review was performed to identify outcome measures in studies published from 1999-2009 focusing on persons with IBD as well as to identify and quantify the concepts contained in these measures using the ICF as a reference.
• A qualitative study (6 focus groups with 26 participants) was performed to identify aspects of the "lived experience" that are important to persons with IBD - to explore the so-called patient perspective.
• An internet-based expert survey was performed to gather the opinion of an international pool of 125 experts (gastroenterologists, colorectal surgeons, clinical psychologists, stoma therapists, nurses, dieticians and social workers) on their clinical experience about the most relevant and typical areas to be considered in persons with IBD.
• A multicentre cross-sectional study with 192 patients was performed at 3 study centres in France to describe functioning and health of persons with IBD and to identify the most common problems using the extended ICF checklist.

The information collected from these preparatory studies was presented at the international consensus conference, a multi-stage, well-established decision-making and consensus process that took place at the Swiss Paraplegic Research (Switzerland) from 24-26 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 ICF Core Sets for IBD.

36 ICF categories were selected for inclusion in the Comprehensive ICF Core for IBD. These categories can be taken into account when conducting a comprehensive, multidisciplinary assessment. Out of the 36 Comprehensive ICF Core Set categories, 19 ICF categories were selected for the Brief ICF Core for IBD. The Brief ICF Core Set can be used in settings in which a brief description and assessment of functioning of a person with IBD is sufficient. Additionally, the ICF Core Sets for IBD will form the basis for the development of assessment instruments to quantify the severity of IBD, to measure change over time and to measure effectiveness of interventions.

For more information, feel free to contact the ICF Research Branch (michaela.coenen@med.lmu.de).

• Comprehensive Core Set for IBD (download PDF)
• Brief Core Set for IBD (download PDF)