Development of the first disability index for inflammatory bowel disease based on the international classification of functioning, disability and health

Laurent Peyrin-Biroulet, Alarcos Cieza, William J Sandborn, Michaela Coenen, Yehuda Chowers, Toshifumi Hibi, Nenad Kostanjsek, Gerold Stucki, Jean-Frédéric Colombel, International Programme to Develop New Indexes for Crohn's Disease (IPNIC) group, Walter Reinisch, Herbert Tilg, Michael Kamm, Geert D'Haens, Edouard Louis, Geert Van Assche, Brian Feagan, E Jan Irvine, Pierre Michetti, Toshifumi Hibi, Jürgen Schölmerich, Stefan Schreiber, Pia Munkholm, Julian Panes, Jean-Frédéric Colombel, Jacques Cosnes, Marc Lémann, Maïté Lewin, Jean-Yves Mary, Benjamin Pariente, Laurent Peyrin-Biroulet, Simon Travis, Yehuda Chowers, Silvio Danese, Maurizio Vecchi, Daan W Hommes, Tom Oresland, Joel Fletcher, Edward V Loftus Jr, William J Sandborn, Bruce E Sands, Laurent Peyrin-Biroulet, Alarcos Cieza, William J Sandborn, Michaela Coenen, Yehuda Chowers, Toshifumi Hibi, Nenad Kostanjsek, Gerold Stucki, Jean-Frédéric Colombel, International Programme to Develop New Indexes for Crohn's Disease (IPNIC) group, Walter Reinisch, Herbert Tilg, Michael Kamm, Geert D'Haens, Edouard Louis, Geert Van Assche, Brian Feagan, E Jan Irvine, Pierre Michetti, Toshifumi Hibi, Jürgen Schölmerich, Stefan Schreiber, Pia Munkholm, Julian Panes, Jean-Frédéric Colombel, Jacques Cosnes, Marc Lémann, Maïté Lewin, Jean-Yves Mary, Benjamin Pariente, Laurent Peyrin-Biroulet, Simon Travis, Yehuda Chowers, Silvio Danese, Maurizio Vecchi, Daan W Hommes, Tom Oresland, Joel Fletcher, Edward V Loftus Jr, William J Sandborn, Bruce E Sands

Abstract

Objective: The impact of inflammatory bowel disease (IBD) on disability remains poorly understood. The World Health Organization's integrative model of human functioning and disability in the International Classification of Functioning, Disability and Health (ICF) makes disability assessment possible. The ICF is a hierarchical coding system with four levels of details that includes over 1400 categories. The aim of this study was to develop the first disability index for IBD by selecting most relevant ICF categories that are affected by IBD.

Methods: Relevant ICF categories were identified through four preparatory studies (systematic literature review, qualitative study, expert survey and cross-sectional study), which were presented at a consensus conference. Based on the identified ICF categories, a questionnaire to be filled in by clinicians, called the 'IBD disability index', was developed.

Results: The four preparatory studies identified 138 second-level categories: 75 for systematic literature review (153 studies), 38 for qualitative studies (six focus groups; 27 patients), 108 for expert survey (125 experts; 37 countries; seven occupations) and 98 for cross-sectional study (192 patients; three centres). The consensus conference (20 experts; 17 countries) led to the selection of 19 ICF core set categories that were used to develop the IBD disability index: seven on body functions, two on body structures, five on activities and participation and five on environmental factors.

Conclusions: The IBD disability index is now available. It will be used in studies to evaluate the long-term effect of IBD on patient functional status and will serve as a new endpoint in disease-modification trials.

Conflict of interest statement

Competing interests: J-F Colombel, J Cosnes, T Oresland, L Peryin-Biroulet, W Reinisch, W Sandborn, J Schölmerich, S Travis, G Van Assche, and M Vecchi have received research support from and/or served as consultants for Abbott Laboratories. No potential conflicts (financial, professional, or personal) relevant to the manuscript for the other authors.

Figures

Figure 1
Figure 1
Inflammatory bowel disease disability index.

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