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Inflammatory bowel disease
Original article
Development of the first disability index for inflammatory bowel disease based on the international classification of functioning, disability and health
  1. Laurent Peyrin-Biroulet1,
  2. Alarcos Cieza2,3,4,
  3. William J Sandborn5,
  4. Michaela Coenen2,3,
  5. Yehuda Chowers6,
  6. Toshifumi Hibi7,
  7. Nenad Kostanjsek8,
  8. Gerold Stucki3,4,9,
  9. Jean-Frédéric Colombel10,
  10. the International Programme to Develop New Indexes for Crohn's Disease (IPNIC) group*
  1. 1Department of Hepato-gastroenterology, Inserm U954, University Hospital of Nancy-Brabois, Vandoeuvre-lès-Nancy, France
  2. 2Institute for Health and Rehabilitation Sciences (IHRS), Research Unit for Biopsychosocial Health, Ludwig-Maximilians-University, Munich, Germany
  3. 3International Classification of Functioning, Disability and Health (ICF) Research Branch in collaboration with the World Health Organisation Collaborating Centre for Family of International Classifications (WHO-FIC CC) in Germany at German Institute of Medical Documentation and Information (DIMDI), Munich, Germany
  4. 4Swiss Paraplegic Research, Nottwil, Switzerland
  5. 5Division of Gastroenterology, University of California San Diego, La Jolla, California, USA
  6. 6Department of Gastroenterology, Rambam Health Care Campus, Bat Galim, Haifa, Israel
  7. 7Department of Internal Medicine, Division of Gastroenterology and Hepatology, Keio University School of Medicine, Tokyo, Japan
  8. 8Classification, Terminology and Standards (CTS), World Health Organisation (WHO), Geneva, Switzerland
  9. 9Department of Health Sciences and Health Policy, University of Lucerne, Lucerne and Nottwil, Switzerland
  10. 10Department of Hepato-gastroenterology, Huriez Hospital, University Hospital of Lille, Lille, France
  1. Correspondence to Professor Jean-Frédéric Colombel, Département d'Hépato-gastroentérologie, Hôpital Claude Huriez, Centre Hospitalier Universitaire Régional, 59037 Lille, France; jean-frederic.colombel{at}chru-lille.fr

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.

  • Antibacterial peptide
  • azathioprine
  • bacterial translocation
  • Crohn's colitis
  • Crohn's disease
  • disability
  • gut immunology
  • IBD basic research
  • IBD clinical
  • IBD models
  • ICF
  • immunology
  • inflammatory bowel disease
  • infliximab
  • lamina proprial lymphocytes
  • mucosal immunology
  • 6-mercaptopurine
  • thiopurine methyltransferase
  • ulcerative colitis

This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/2.0/ and http://creativecommons.org/licenses/by-nc/2.0/legalcode.

https://doi.org/10.1136/gutjnl-2011-300049

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    Footnotes

    • ↵* The IPNIC group: Walter Reinisch and Herbert Tilg (Austria); Michael Kamm (Australia); Geert D'Haens, Edouard Louis and Geert Van Assche (Belgium); Brian Feagan and E. Jan Irvine (Canada); Pierre Michetti (Switzerland); Toshifumi Hibi (Japan); Jürgen Schölmerich and Stefan Schreiber (Germany); Pia Munkholm (Denmark); Julian Panes (Spain); Jean-FrédéricColombel, Jacques Cosnes, Marc Lémann, Maïté Lewin, Jean-Yves Mary, Benjamin Pariente and Laurent Peyrin-Biroulet (France); Simon Travis (UK); Yehuda Chowers (Israel); Silvio Danese and Maurizio Vecchi (Italy); Daan W. Hommes (The Netherlands); Tom Oresland (Norway); Joel Fletcher, Edward V Loftus Jr., William J. Sandborn and Bruce E. Sands (USA).

    • Funding The preliminary studies and the consensus conference were funded by the French association INTEST-INFO (www.intestinfo.com). Abbott provided funding for the IPNIC programme. F Péretz (independent medical writer) provided medical writing and editing services in the development of the manuscript. Financial support for these services was provided by Abbott.

    • 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.

    • Patient consent Obtained.

    • Ethics approval Qualitative study: the study protocol has been approved by the appropriate institutional review board (Mayo Clinic). Cross-sectional study: the protocol was approved by the appropriate French ethics committee.

    • Provenance and peer review Not commissioned; externally peer reviewed.