Development of the first disability index for inflammatory bowel disease based on the international classification of functioning, disability and health
Identifieur interne : 000370 ( Pmc/Curation ); précédent : 000369; suivant : 000371Development of the first disability index for inflammatory bowel disease based on the international classification of functioning, disability and health
Auteurs : Laurent Peyrin-Biroulet [France] ; Alarcos Cieza [Allemagne, Suisse] ; William J. Sandborn [États-Unis] ; Michaela Coenen [Allemagne] ; Yehuda Chowers [Israël] ; Toshifumi Hibi [Japon] ; Nenad Kostanjsek [Suisse] ; Gerold Stucki [Allemagne, Suisse] ; Jean-Frédéric Colombel [France]Source :
- Gut [ 0017-5749 ] ; 2011.
Abstract
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.
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.
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.
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.
Url:
DOI: 10.1136/gutjnl-2011-300049
PubMed: 21646246
PubMed Central: 3245899
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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</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>International 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</wicri:regionArea></affiliation></author><author><name sortKey="Chowers, Yehuda" sort="Chowers, Yehuda" uniqKey="Chowers Y" first="Yehuda" last="Chowers">Yehuda Chowers</name><affiliation wicri:level="1"><nlm:aff id="aff6">Department of Gastroenterology, Rambam Health Care Campus, Bat Galim, Haifa, Israel</nlm:aff><country xml:lang="fr">Israël</country><wicri:regionArea>Department of Gastroenterology, Rambam Health Care Campus, Bat Galim, Haifa</wicri:regionArea></affiliation></author><author><name sortKey="Hibi, Toshifumi" sort="Hibi, Toshifumi" uniqKey="Hibi T" first="Toshifumi" last="Hibi">Toshifumi Hibi</name><affiliation wicri:level="1"><nlm:aff id="aff7">Department of Internal Medicine, Division of Gastroenterology and Hepatology, Keio University School of Medicine, Tokyo, Japan</nlm:aff><country xml:lang="fr">Japon</country><wicri:regionArea>Department of Internal Medicine, Division of Gastroenterology and Hepatology, Keio University School of Medicine, Tokyo</wicri:regionArea></affiliation></author><author><name sortKey="Kostanjsek, Nenad" sort="Kostanjsek, Nenad" uniqKey="Kostanjsek N" first="Nenad" last="Kostanjsek">Nenad Kostanjsek</name><affiliation wicri:level="1"><nlm:aff id="aff8">Classification, Terminology and Standards (CTS), World Health Organisation (WHO), Geneva, Switzerland</nlm:aff><country xml:lang="fr">Suisse</country><wicri:regionArea>Classification, Terminology and Standards (CTS), World Health Organisation (WHO), Geneva</wicri:regionArea></affiliation></author><author><name sortKey="Stucki, Gerold" sort="Stucki, Gerold" uniqKey="Stucki G" first="Gerold" last="Stucki">Gerold Stucki</name><affiliation wicri:level="1"><nlm:aff id="aff3">International 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</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>International 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</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="aff4">Swiss Paraplegic Research, Nottwil, Switzerland</nlm:aff><country xml:lang="fr">Suisse</country><wicri:regionArea>Swiss Paraplegic Research, Nottwil</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="aff9">Department of Health Sciences and Health Policy, University of Lucerne, Lucerne and Nottwil, Switzerland</nlm:aff><country xml:lang="fr">Suisse</country><wicri:regionArea>Department of Health Sciences and Health Policy, University of Lucerne, Lucerne and Nottwil</wicri:regionArea></affiliation></author><author><name sortKey="Colombel, Jean Frederic" sort="Colombel, Jean Frederic" uniqKey="Colombel J" first="Jean-Frédéric" last="Colombel">Jean-Frédéric Colombel</name><affiliation wicri:level="1"><nlm:aff id="aff10">Department of Hepato-gastroenterology, Huriez Hospital, University Hospital of Lille, Lille, France</nlm:aff><country xml:lang="fr">France</country><wicri:regionArea>Department of Hepato-gastroenterology, Huriez Hospital, University Hospital of Lille, Lille</wicri:regionArea></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PMC</idno><idno type="pmid">21646246</idno><idno type="pmc">3245899</idno><idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3245899</idno><idno type="RBID">PMC:3245899</idno><idno type="doi">10.1136/gutjnl-2011-300049</idno><date when="2011">2011</date><idno type="wicri:Area/Pmc/Corpus">000370</idno><idno type="wicri:Area/Pmc/Curation">000370</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">Development of the first disability index for inflammatory bowel disease based on the international classification of functioning, disability and health</title><author><name sortKey="Peyrin Biroulet, Laurent" sort="Peyrin Biroulet, Laurent" uniqKey="Peyrin Biroulet L" first="Laurent" last="Peyrin-Biroulet">Laurent Peyrin-Biroulet</name><affiliation wicri:level="1"><nlm:aff id="aff1">Department of Hepato-gastroenterology, Inserm U954, University Hospital of Nancy-Brabois, Vandoeuvre-lès-Nancy, France</nlm:aff><country xml:lang="fr">France</country><wicri:regionArea>Department of Hepato-gastroenterology, Inserm U954, University Hospital of Nancy-Brabois, Vandoeuvre-lès-Nancy</wicri:regionArea></affiliation></author><author><name sortKey="Cieza, Alarcos" sort="Cieza, Alarcos" uniqKey="Cieza A" first="Alarcos" last="Cieza">Alarcos Cieza</name><affiliation wicri:level="1"><nlm:aff id="aff2">Institute for Health and Rehabilitation Sciences (IHRS), Research Unit for Biopsychosocial Health, Ludwig-Maximilians-University, Munich, Germany</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>Institute for Health and Rehabilitation Sciences (IHRS), Research Unit for Biopsychosocial Health, Ludwig-Maximilians-University, Munich</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="aff3">International 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</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>International 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</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="aff4">Swiss Paraplegic Research, Nottwil, Switzerland</nlm:aff><country xml:lang="fr">Suisse</country><wicri:regionArea>Swiss Paraplegic Research, Nottwil</wicri:regionArea></affiliation></author><author><name sortKey="Sandborn, William J" sort="Sandborn, William J" uniqKey="Sandborn W" first="William J" last="Sandborn">William J. Sandborn</name><affiliation wicri:level="1"><nlm:aff id="aff5">Division of Gastroenterology, University of California San Diego, La Jolla, California, USA</nlm:aff><country xml:lang="fr">États-Unis</country><wicri:regionArea>Division of Gastroenterology, University of California San Diego, La Jolla, California</wicri:regionArea></affiliation></author><author><name sortKey="Coenen, Michaela" sort="Coenen, Michaela" uniqKey="Coenen M" first="Michaela" last="Coenen">Michaela Coenen</name><affiliation wicri:level="1"><nlm:aff id="aff2">Institute for Health and Rehabilitation Sciences (IHRS), Research Unit for Biopsychosocial Health, Ludwig-Maximilians-University, Munich, Germany</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>Institute for Health and Rehabilitation Sciences (IHRS), Research Unit for Biopsychosocial Health, Ludwig-Maximilians-University, Munich</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="aff3">International 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</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>International 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</wicri:regionArea></affiliation></author><author><name sortKey="Chowers, Yehuda" sort="Chowers, Yehuda" uniqKey="Chowers Y" first="Yehuda" last="Chowers">Yehuda Chowers</name><affiliation wicri:level="1"><nlm:aff id="aff6">Department of Gastroenterology, Rambam Health Care Campus, Bat Galim, Haifa, Israel</nlm:aff><country xml:lang="fr">Israël</country><wicri:regionArea>Department of Gastroenterology, Rambam Health Care Campus, Bat Galim, Haifa</wicri:regionArea></affiliation></author><author><name sortKey="Hibi, Toshifumi" sort="Hibi, Toshifumi" uniqKey="Hibi T" first="Toshifumi" last="Hibi">Toshifumi Hibi</name><affiliation wicri:level="1"><nlm:aff id="aff7">Department of Internal Medicine, Division of Gastroenterology and Hepatology, Keio University School of Medicine, Tokyo, Japan</nlm:aff><country xml:lang="fr">Japon</country><wicri:regionArea>Department of Internal Medicine, Division of Gastroenterology and Hepatology, Keio University School of Medicine, Tokyo</wicri:regionArea></affiliation></author><author><name sortKey="Kostanjsek, Nenad" sort="Kostanjsek, Nenad" uniqKey="Kostanjsek N" first="Nenad" last="Kostanjsek">Nenad Kostanjsek</name><affiliation wicri:level="1"><nlm:aff id="aff8">Classification, Terminology and Standards (CTS), World Health Organisation (WHO), Geneva, Switzerland</nlm:aff><country xml:lang="fr">Suisse</country><wicri:regionArea>Classification, Terminology and Standards (CTS), World Health Organisation (WHO), Geneva</wicri:regionArea></affiliation></author><author><name sortKey="Stucki, Gerold" sort="Stucki, Gerold" uniqKey="Stucki G" first="Gerold" last="Stucki">Gerold Stucki</name><affiliation wicri:level="1"><nlm:aff id="aff3">International 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</nlm:aff><country xml:lang="fr">Allemagne</country><wicri:regionArea>International 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</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="aff4">Swiss Paraplegic Research, Nottwil, Switzerland</nlm:aff><country xml:lang="fr">Suisse</country><wicri:regionArea>Swiss Paraplegic Research, Nottwil</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="aff9">Department of Health Sciences and Health Policy, University of Lucerne, Lucerne and Nottwil, Switzerland</nlm:aff><country xml:lang="fr">Suisse</country><wicri:regionArea>Department of Health Sciences and Health Policy, University of Lucerne, Lucerne and Nottwil</wicri:regionArea></affiliation></author><author><name sortKey="Colombel, Jean Frederic" sort="Colombel, Jean Frederic" uniqKey="Colombel J" first="Jean-Frédéric" last="Colombel">Jean-Frédéric Colombel</name><affiliation wicri:level="1"><nlm:aff id="aff10">Department of Hepato-gastroenterology, Huriez Hospital, University Hospital of Lille, Lille, France</nlm:aff><country xml:lang="fr">France</country><wicri:regionArea>Department of Hepato-gastroenterology, Huriez Hospital, University Hospital of Lille, Lille</wicri:regionArea></affiliation></author></analytic><series><title level="j">Gut</title><idno type="ISSN">0017-5749</idno><idno type="eISSN">1468-3288</idno><imprint><date when="2011">2011</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><sec><title>Objective</title><p>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.</p></sec><sec><title>Methods</title><p>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.</p></sec><sec><title>Results</title><p>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.</p></sec><sec><title>Conclusions</title><p>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.</p></sec></div></front><back><div1 type="bibliography"><listBibl><biblStruct><analytic><author><name sortKey="Loftus, Ev" uniqKey="Loftus E">EV Loftus</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Peyrin Biroulet, L" uniqKey="Peyrin Biroulet L">L Peyrin-Biroulet</name></author><author><name sortKey="Cieza, A" uniqKey="Cieza A">A Cieza</name></author><author><name sortKey="Sandborn, Wj" uniqKey="Sandborn W">WJ Sandborn</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Casellas, F" uniqKey="Casellas F">F Casellas</name></author><author><name sortKey="L Pez Vivancos, J" uniqKey="L Pez Vivancos J">J López-Vivancos</name></author><author><name sortKey="Vergara, M" uniqKey="Vergara M">M 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<front><journal-meta><journal-id journal-id-type="nlm-ta">Gut</journal-id><journal-id journal-id-type="publisher-id">gut</journal-id><journal-id journal-id-type="hwp">gutjnl</journal-id><journal-title-group><journal-title>Gut</journal-title></journal-title-group><issn pub-type="ppub">0017-5749</issn><issn pub-type="epub">1468-3288</issn><publisher><publisher-name>BMJ Group</publisher-name><publisher-loc>BMA House, Tavistock Square, London, WC1H 9JR</publisher-loc></publisher></journal-meta><article-meta><article-id pub-id-type="pmid">21646246</article-id><article-id pub-id-type="pmc">3245899</article-id><article-id pub-id-type="publisher-id">gutjnl-2011-300049</article-id><article-id pub-id-type="doi">10.1136/gutjnl-2011-300049</article-id><article-categories><subj-group subj-group-type="heading"><subject>Inflammatory Bowel Disease</subject></subj-group><subj-group subj-group-type="hwp-journal-coll"><subject>1506</subject></subj-group><series-title>Original article</series-title></article-categories><title-group><article-title>Development of the first disability index for inflammatory bowel disease based on the international classification of functioning, disability and health</article-title></title-group><contrib-group><contrib contrib-type="author"><name><surname>Peyrin-Biroulet</surname><given-names>Laurent</given-names></name><xref ref-type="aff" rid="aff1">1</xref></contrib><contrib contrib-type="author"><name><surname>Cieza</surname><given-names>Alarcos</given-names></name><xref ref-type="aff" rid="aff2">2</xref><xref ref-type="aff" rid="aff3">3</xref><xref ref-type="aff" rid="aff4">4</xref></contrib><contrib contrib-type="author"><name><surname>Sandborn</surname><given-names>William J</given-names></name><xref ref-type="aff" rid="aff5">5</xref></contrib><contrib contrib-type="author"><name><surname>Coenen</surname><given-names>Michaela</given-names></name><xref ref-type="aff" rid="aff2">2</xref><xref ref-type="aff" rid="aff3">3</xref></contrib><contrib contrib-type="author"><name><surname>Chowers</surname><given-names>Yehuda</given-names></name><xref ref-type="aff" rid="aff6">6</xref></contrib><contrib contrib-type="author"><name><surname>Hibi</surname><given-names>Toshifumi</given-names></name><xref ref-type="aff" rid="aff7">7</xref></contrib><contrib contrib-type="author"><name><surname>Kostanjsek</surname><given-names>Nenad</given-names></name><xref ref-type="aff" rid="aff8">8</xref></contrib><contrib contrib-type="author"><name><surname>Stucki</surname><given-names>Gerold</given-names></name><xref ref-type="aff" rid="aff3">3</xref><xref ref-type="aff" rid="aff4">4</xref><xref ref-type="aff" rid="aff9">9</xref></contrib><contrib contrib-type="author" corresp="yes"><name><surname>Colombel</surname><given-names>Jean-Frédéric</given-names></name><xref ref-type="aff" rid="aff10">10</xref></contrib><contrib contrib-type="author"><collab>the International Programme to Develop New Indexes for Crohn's Disease (IPNIC) group<xref ref-type="author-notes" rid="fn1">*</xref></collab></contrib></contrib-group><aff id="aff1"><label>1</label>Department of Hepato-gastroenterology, Inserm U954, University Hospital of Nancy-Brabois, Vandoeuvre-lès-Nancy, France</aff><aff id="aff2"><label>2</label>Institute for Health and Rehabilitation Sciences (IHRS), Research Unit for Biopsychosocial Health, Ludwig-Maximilians-University, Munich, Germany</aff><aff id="aff3"><label>3</label>International 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</aff><aff id="aff4"><label>4</label>Swiss Paraplegic Research, Nottwil, Switzerland</aff><aff id="aff5"><label>5</label>Division of Gastroenterology, University of California San Diego, La Jolla, California, USA</aff><aff id="aff6"><label>6</label>Department of Gastroenterology, Rambam Health Care Campus, Bat Galim, Haifa, Israel</aff><aff id="aff7"><label>7</label>Department of Internal Medicine, Division of Gastroenterology and Hepatology, Keio University School of Medicine, Tokyo, Japan</aff><aff id="aff8"><label>8</label>Classification, Terminology and Standards (CTS), World Health Organisation (WHO), Geneva, Switzerland</aff><aff id="aff9"><label>9</label>Department of Health Sciences and Health Policy, University of Lucerne, Lucerne and Nottwil, Switzerland</aff><aff id="aff10"><label>10</label>Department of Hepato-gastroenterology, Huriez Hospital, University Hospital of Lille, Lille, France</aff><author-notes><corresp><bold>Correspondence to</bold> Professor Jean-Frédéric Colombel, Département d'Hépato-gastroentérologie, Hôpital Claude Huriez, Centre Hospitalier Universitaire Régional, 59037 Lille, France; <email>jean-frederic.colombel@chru-lille.fr</email></corresp><fn id="fn1"><label>*</label><p>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).</p></fn></author-notes><pub-date pub-type="epub"><day>5</day><month>6</month><year>2011</year></pub-date><pub-date pub-type="ppub"><month>2</month><year>2012</year></pub-date><pub-date pub-type="pmc-release"><day>5</day><month>6</month><year>2011</year></pub-date><pmc-comment> PMC Release delay is 0 months and 0 days and was based on the
<volume>61</volume><issue>2</issue><fpage>241</fpage><lpage>247</lpage><history><date date-type="accepted"><day>26</day><month>4</month><year>2011</year></date></history><permissions><copyright-statement>© 2011, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.</copyright-statement><copyright-year>2011</copyright-year><license license-type="open-access"><license-p>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: <ext-link ext-link-type="uri" xlink:href="http://creativecommons.org/licenses/by-nc/2.0/">http://creativecommons.org/licenses/by-nc/2.0/</ext-link> and <ext-link ext-link-type="uri" xlink:href="http://creativecommons.org/licenses/by-nc/2.0/legalcode">http://creativecommons.org/licenses/by-nc/2.0/legalcode</ext-link>.</license-p></license></permissions><self-uri xlink:title="pdf" xlink:type="simple" xlink:href="gutjnl-2011-300049.pdf"></self-uri><abstract><sec><title>Objective</title><p>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.</p></sec><sec><title>Methods</title><p>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.</p></sec><sec><title>Results</title><p>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.</p></sec><sec><title>Conclusions</title><p>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.</p></sec></abstract><kwd-group><kwd>Antibacterial peptide</kwd><kwd>azathioprine</kwd><kwd>bacterial translocation</kwd><kwd>Crohn's colitis</kwd><kwd>Crohn's disease</kwd><kwd>disability</kwd><kwd>gut immunology</kwd><kwd>IBD basic research</kwd><kwd>IBD clinical</kwd><kwd>IBD models</kwd><kwd>ICF</kwd><kwd>immunology</kwd><kwd>inflammatory bowel disease</kwd><kwd>infliximab</kwd><kwd>lamina proprial lymphocytes</kwd><kwd>mucosal immunology</kwd><kwd>6-mercaptopurine</kwd><kwd>thiopurine methyltransferase</kwd><kwd>ulcerative colitis</kwd></kwd-group></article-meta></front></pmc></record>Pour manipuler ce document sous Unix (Dilib)
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