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Development of the first disability index for inflammatory bowel disease based on the International Classification of Functioning, Disability and Health

Development of the first disability index for inflammatory bowel disease based on the International Classification of Functioning, Disability and Health
Development of the first disability index for inflammatory bowel disease based on the International Classification of Functioning, Disability and Health
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.
0017-5749
241-247
Peyrin-Biroulet, Laurent
6563e0d4-1b5e-45fc-82b0-c38340d878c8
Cieza, Alarcos
a0df25c5-ee2c-4580-82b3-d0a75591580e
Sandborn, William J.
20fc2fd3-f68d-4ff4-b669-1bbeeadb421c
Coenen, Michaela
cbf780b8-d30a-4418-9f92-9b1f9c03cef7
Chowers, Yehuda
34bd70b0-9540-40a8-a9b6-c0c00f4a9fe8
Hibi, Toshifumi
ff34b44c-fbf1-4352-ba7a-07f7355ebfa0
Kostanjsek, Nenad
23ae1206-2272-4cf5-9b2f-ba06f3352dbb
Stucki, Gerold
0534525c-103b-45be-b0a5-061d8867ef0d
Colombel, Jean-Frédéric
e3983821-7bf5-4d86-bb3e-92f82e8c8cea
Peyrin-Biroulet, Laurent
6563e0d4-1b5e-45fc-82b0-c38340d878c8
Cieza, Alarcos
a0df25c5-ee2c-4580-82b3-d0a75591580e
Sandborn, William J.
20fc2fd3-f68d-4ff4-b669-1bbeeadb421c
Coenen, Michaela
cbf780b8-d30a-4418-9f92-9b1f9c03cef7
Chowers, Yehuda
34bd70b0-9540-40a8-a9b6-c0c00f4a9fe8
Hibi, Toshifumi
ff34b44c-fbf1-4352-ba7a-07f7355ebfa0
Kostanjsek, Nenad
23ae1206-2272-4cf5-9b2f-ba06f3352dbb
Stucki, Gerold
0534525c-103b-45be-b0a5-061d8867ef0d
Colombel, Jean-Frédéric
e3983821-7bf5-4d86-bb3e-92f82e8c8cea

Peyrin-Biroulet, Laurent, Cieza, Alarcos, Sandborn, William J., Coenen, Michaela, Chowers, Yehuda, Hibi, Toshifumi, Kostanjsek, Nenad, Stucki, Gerold and Colombel, Jean-Frédéric (2012) Development of the first disability index for inflammatory bowel disease based on the International Classification of Functioning, Disability and Health. Gut, 61, 241-247. (doi:10.1136/gutjnl-2011-300049). (PMID:21646246)

Record type: Article

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.

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e-pub ahead of print date: 5 June 2012
Published date: 2012
Organisations: Psychology

Identifiers

Local EPrints ID: 340248
URI: http://eprints.soton.ac.uk/id/eprint/340248
ISSN: 0017-5749
PURE UUID: a9bca475-be67-42f4-95dc-2e505cb3d9a9

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Date deposited: 15 Jun 2012 10:29
Last modified: 14 Mar 2024 11:21

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Contributors

Author: Laurent Peyrin-Biroulet
Author: Alarcos Cieza
Author: William J. Sandborn
Author: Michaela Coenen
Author: Yehuda Chowers
Author: Toshifumi Hibi
Author: Nenad Kostanjsek
Author: Gerold Stucki
Author: Jean-Frédéric Colombel

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