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DOP075 Looking beyond symptoms and disease activity to define disease severity in inflammatory bowel disease: results of an IOIBD specialist panel

C. Siegel1, C. Whitman2, B. Spiegel2, B. Feagan3, B. Sands4, E. Loftus5, R. Panaccione6, G. D’Haens7, C. Bernstein8, R. Gearry9, S. Ng10, G. Mantzaris11, B. Sartor12, M. Silverberg13, R. Riddell13, I. Koutroubakis14, C. O’Morain15, P. Lakatos16, D. McGovern2, J. Halfvarson17, W. Reinisch18, G. Rogler19, W. Kruis20, C. Tysk17, S. Schreiber21, S. Danese22, W. Sandborn23, A. Griffiths24, B. Moum25, C. Gasche26, F. Pallone27, S. Travis28, J. Panes29, J.-F. Colombel4, S. Hanauer30, L. Peyrin-Biroulet*31

1Geisel School of Medicine at Dartmouth, Inflammatory Bowel Disease Centre, Lebanon, New Hampshire, United States, 2Cedars-Sinai Medical Centre, Los Angeles, California, United States, 3Roberts Clinical Trials, London, Ontario, Canada, 4Icahn School of Medicine at Mount Sinai, New York, New York, United States, 5Mayo Clinic, Rochester, Minnesota, United States, 6University of Calgary, Calgary, Canada, 7Academic Medical Centre, Amsterdam, Netherlands, 8University of Manitoba, Winnipeg, Canada, 9University of Otago, Christchurch, New Zealand, 10Chinese University of Hong Kong, Hong Kong, Hong Kong, 11Evangelismos-PolyCliniki-Ophthalmiatreion Hospital, Athens, Greece, 12University of North Carolina, Chapel Hill, North Carolina, United States, 13Mount Sinai Hospital, Toronto, Canada, 14University Hospital Heraklion, Crete, Greece, 15Charlemont Clinic, Dublin, Ireland, 16Semmelweis University, Budapest, Hungary, 17Örebro University, Örebro, Sweden, 18McMaster University Medical Centre, Department of Gastroenterology, Hamilton, Canada, 19University Hospital Zürich, Clinic for Hepatology and Gastroenterology, Zürich, Switzerland, 20University of Cologne, Clinic for Internal Medicine, Koln, Germany, 21Universitätsklinikum Schleswig-Holstein Kiel, Clinic for Internal Medicine, Kiel, Germany, 22Humanitas University, Milan, Italy, 23University of California San Diego, San Diego, California, United States, 24Hospital for Sick Children, Toronto, Canada, 25Oslo University, Oslo, Norway, 26Medical University and General Hospital Vienna, Vienna, Austria, 27University Rome, Rome, Italy, 28Oxford University Hospital, Oxford, United Kingdom, 29Hospital Clinic de Barcelona, Barcelona, Spain, 30Northwestern Feinberg School of Medicine, Chicago, Illinois, United States, 31CHU Nancy, Department of Gastroenterology and Hepatology, Vandoeuvre-Lès-Nancy, France


A systematic review identified 3 main domains relevant to the evaluation of disease severity in inflammatory bowel disease (IBD): effect of the disease on the patient, inflammatory burden, and disease course.1 The aims of this study are to define the attributes within these domains that are most important to determining disease severity and to rank the importance of these individual attributes for both Crohn’s disease (CD) and ulcerative (UC).


Using a modified Delphi panel, 14 members of the International Organisation for the Study of Inflammatory Bowel Diseases (IOIBD) selected the most important attributes from the established domains to represent best disease severity for both CD and UC. Next, 18 IOIBD members independently completed a conjoint analysis exercise to determine the strength of importance of each of these attributes. These results were reviewed anonymously at an in-person panel. After a period of discussion, these specialists then repeated the conjoint analysis exercise first as a group and then independently to yield a final relative ranking of which attributes are more important than others to consider when defining overall disease severity.


The attributes to define disease severity were divided into 3 different categories: effect of disease (clinical symptoms and effect on daily activity); inflammatory burden (serum biomarkers, mucosal lesions); and disease course (disease complications and hospitalisations, response to medications, and disease extent). For CD 15.8% of disease severity was attributed to the presence of mucosal lesions, and history of a fistula explained 10.9%. History of abscess explained 9.7% of CD severity, and 7.4% was attributed to history of intestinal resection.

Table 1 Proportion of contribution of disease attributes to overall disease severity

Attribute of Crohn’sAttribute of UC
Mucosal lesions 15.8%Mucosal lesions 18.1%
Fistula 10.9%Effect on daily activities 14.0%
Perianal abscess 9.7%C-reactive protein 11.2%
Prior bowel resection 7.4%Prior biologic use 10.1%
Stoma 7.1%Recent hospitalisation 7.7%
Disease extent 5.8%Recent steroid use 7.6%
Frequency of loose stools 5.6%Anaemia 5.1%
Stricture 5.4%Frequency of loose stools 4.8%
C-reactive protein, prior biologic use, effect on daily activities, albumin, anorectal symptoms, anaemia, abdominal pain, and recent steroid, all < 5.4%Albumin, disease extent, nocturnal bowel movements, anorectal symptoms, and rectal bleeding, all ≤ 4.8%

For UC 18.1% of disease severity was attributed to mucosal lesions, followed by effect on daily activities with 14%, C-reactive protein at 11.2%, and prior experience with biologics at 10.1%.


Based on expert opinion, mucosal lesions are the most important attribute associated with disease severity for both diseases. When comparing CD and UC, CD severity is associated more with intestinal damage, in contrast to UC disease severity, which is more dependent on symptoms and effect on daily life. Although symptoms related to disease activity are a component of overall disease severity, many factors need to be taken into account to understand the total effect of IBD on patients.


[1] Peyrin-Biroulet L, Panés J, Sandborn WJ, et al. Defining disease severity in inflammatory bowel disease: current and future directions. Clin Gastroenterol Hepatol 2015; pii: S1542-3565(15)00787-9. doi: 10.1016/j.cgh.2015.06.001. Acessed December 30, 2015.