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P148. Disability in inflammatory bowel disease (IBD): Developing ICF core sets for patients with IBD based on the WHO international classification of functioning, disability and health

L. Peyrin-Biroulet1, A. Cieza2, W.J. Sandborn3, M. Coenen2, Y. Chowers4, T. Hibi5, N. Kostanjsek6, G. Stucki6, J. Colombel7

1Nancy University Hospital, Vandoeuvre-lès-Nancy, France; 2Ludwig-Maximilian University, Munich, Germany; 3University of California San Diego, La Jolla, CA, United States; 4Rambam Health Care Campus, Bat Galim, Haifa, Israel; 5Keio University Medicine School, Tokyo, Japan; 6Swiss Paraplegic Research, Nottwil, Switzerland; 7University Hospital, Lille, France

Aim: Disability is the human experience of impaired body functions and structures, activity limitations, and participation restrictions in the interaction with environmental and personal factors. In contrast to other chronic conditions, the impact of IBD on disability remains poorly understood. The ICF integrative model of human functioning and disability provided by WHO makes disability assessment possible. The ICF is a hierarchical code system (4 levels) where various so-called ICF categories represent the basic units of the classification. It includes >1,400 categories classified according to 4 components: Body Functions, Body Structures, Activities/Participation, and Environmental Factors. The aim of this study, conducted by the IPNIC group and funded by Abbott, was to identify the categories of ICF that are affected by IBD as the first step in the development of a disability index.

Materials and Methods: ICF categories relevant to IBD patients were identified through a formal process developed by WHO: 4 preparatory studies (systematic literature review, patient interviews, expert survey, cross-sectional study) were performed from August 2009 to June 2010. The Comprehensive ICF Core Set that includes all categories affected by IBD and the Brief ICF Core Set that includes the most important of these categories were defined using the results of the preparatory studies during a consensus conference held in June 2010.

Results: The systematic literature review identified 153 studies. Six patient focus groups with 26 patients were performed in one centre. The expert survey included 125 experts from 37 countries and 7 occupations. The cross-sectional study included 192 patients from 3 centers. These preparatory studies identified 138 second-level ICF categories: 75 for systematic literature review, 38 for patient focus groups, 108 for expert survey, 98 for cross-sectional study. As the result of the consensus conference which involved 20 IBD experts from 17 countries, the Comprehensive ICF Core Set included 36 categories (16 categories on Body Functions, 2 on Body Structures, 7 on Activities/Participation, 11 on Environmental Factors) and the Brief ICF Core Set included 19 categories (7 on Body Functions, 2 on Body Structures, 5 on Activities/Participation, 5 on Environmental Factors).

Conclusion: Comprehensive and Brief ICF Core Sets for assessing disability in IBD have been defined according to WHO's ICF classification. These ICF Core Sets will be used to develop a disability index that can be used in studies to evaluate the long-term effect of IBD on patient functional status and as a new endpoint in clinical trials aiming at changing the clinical course of the disease.