Development of the IBD Disk: A Visual Self-administered Tool for Assessing Disability in Inflammatory Bowel Diseases.
The Inflammatory bowel disease (IBD) Disability Index is a validated tool that evaluates functional status; however, it is used mainly in the clinical trial setting. We describe the use of an iterative Delphi consensus process to develop the IBD Disk-a shortened, self-administered adaption of the validated IBD Disability Index-to give immediate visual representation of patient-reported IBD-related disability.



In the preparatory phase, the IBD CONNECT group (30 health care professionals) ranked IBD Disability Index items in the perceived order of importance. The Steering Committee then selected 10 items from the IBD Disability Index to take forward for inclusion in the IBD Disk. In the consensus phase, the items were refined and agreed by the IBD Disk Working Group (14 gastroenterologists) using an online iterative Delphi consensus process. Members could also suggest new element(s) or recommend changes to included elements. The final items for the IBD Disk were agreed in February 2016.



After 4 rounds of voting, the following 10 items were agreed for inclusion in the IBD Disk: abdominal pain, body image, education and work, emotions, energy, interpersonal interactions, joint pain, regulating defecation, sexual functions, and sleep. All elements, except sexual functions, were included in the validated IBD Disability Index.



The IBD Disk has the potential to be a valuable tool for use at a clinical visit. It can facilitate assessment of inflammatory bowel disease-related disability relevant to both patients and physicians, discussion on specific disability-related issues, and tracking changes in disease burden over time.
1Institute of Translational Medicine, College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom; 2Department of Gastroenterology, University Hospital CHU of Liège, Liège, Belgium; 3Department of Gastroenterology, AP-HP, Hôpital Saint-Antoine, ERL 1057 INSERM/UMRS 7203, and GRC-UPMC 03, UPMC Univ, Paris, France; 4Department of Gastroenterology, Imelda Gastrointestinal Clinical Research Centre, Imelda General Hospital, Bonheiden, Belgium; 5CHU Pontchaillou Rennes & Université de Rennes 1, Service des Maladies de l'Appareil Digestif, Rennes, France; 6CHU Nantes, Institut des Maladies de l'Appareil Digestif, Université de Nantes, Nantes, France; 7Department of Gastroenterology and Hepatology, University Hospitals Leuven, Leuven, Belgium; 8Département Gastroenterologie, Hôpital Erasme, Université libre de Bruxelles, Bruxelles, Belgium; 9Department of Gastroenterology, Hepatology and Clinical Nutrition, The Hospital for Sick Children, Toronto, Ontario, Canada; 10Centre Hospitalier Universitaire de Nice, Service de Gastroentérologie et Nutrition Clinique, Nice, France; 11Université de Nice-Sophia-Antipolis, Faculté de Médecine, Nice, France; 12Department of Medicine (Division of Gastroenterology), Farncombe Family Digestive Health Research Institute, McMaster University, Hamilton, Ontario, Canada; 13AbbVie Inc, Dublin, Ireland; 14Division of Gastroenterology, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada; 15Division of Digestive Care and Endoscopy, Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada; and 16Department of Hepato-Gastroenterology and Inserm U954, University Hospital of Nancy, Lorraine University, Vandoeuvre-lès-Nancy, France.
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Beaugerie
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Peyrin-Biroulet
D003697:Delphi Technique; D059026:Diagnostic Self Evaluation; D004185:Disability Evaluation; D005260:Female; D006305:Health Status Indicators; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000175:diagnosis*; D008297:Male; D011795:Surveys and Questionnaires; D064232:Visual Analog Scale