TY - JOUR
T1 - Development of the first disability index for inflammatory bowel disease based on the international classification of functioning, disability and health
AU - Peyrin-Biroulet, Laurent
AU - Cieza, Alarcos
AU - Sandborn, William J.
AU - Coenen, Michaela
AU - Chowers, Yehuda
AU - Hibi, Toshifumi
AU - Kostanjsek, Nenad
AU - Stucki, Gerold
AU - Colombel, Jean Frédéric
AU - Reinisch, Walter
AU - Tilg, Herbert
AU - Kamm, Michael
AU - D'Haens, Geert
AU - Louis, Edouard
AU - Van Assche, Geert
AU - Feagan, Brian
AU - Irvine, E. Jan
AU - Michetti, Pierre
AU - Schölmerich, Jürgen
AU - Schreiber, Stefan
AU - Munkholm, Pia
AU - Panes, Julian
AU - Cosnes, Jacques
AU - Lémann, Marc
AU - Lewin, Maïtë
AU - Mary, Jean Yves
AU - Pariente, Benjamin
AU - Travis, Simon
AU - Danese, Silvio
AU - Vecchi, Maurizio
AU - Hommes, Daan W.
AU - Oresland, Tom
AU - Fletcher, Joel
AU - Loftus, Edward V.
AU - Sands, Bruce E.
PY - 2012/2
Y1 - 2012/2
N2 - 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 crosssectional 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 crosssectional 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.
AB - 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 crosssectional 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 crosssectional 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.
UR - http://www.scopus.com/inward/record.url?scp=84855216805&partnerID=8YFLogxK
U2 - 10.1136/gutjnl-2011-300049
DO - 10.1136/gutjnl-2011-300049
M3 - Article
C2 - 21646246
AN - SCOPUS:84855216805
SN - 0017-5749
VL - 61
SP - 241
EP - 247
JO - Gut
JF - Gut
IS - 2
ER -