https://orcid.org/0000-0001-9579-0516
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Antje Timmer, Johanna Neuser, Dominik de Sordi, Martin Schmidt-Lauber, Hubert Allgayer, Christoph Reichel, Frank Klebl, Florian Obermeier, Elisabeth Schnoy, Petra Jessen, Julia Morgenstern, Ulf Helwig, Christian Maaser, Ludger Leifeld, Sebastian Schmidt, Christian Meinhardt, Ulrich Böcker, Alexander Arlt, Elke Bästlein, Arne Bokemeyer, Jan C Preiß, Fabian Otto-Sobotka, Birgit Kaltz, Cornelia Sander, Wolfgang Kruis, Integrating the Patient Perspective to Validate a Measure of Disease Severity in Inflammatory Bowel Disease: Online Survey of Patients and Their Physicians, Inflammatory Bowel Diseases, Volume 31, Issue 4, April 2025, Pages 983–994, https://doi.org/10.1093/ibd/izae127
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Abstract
The patient perspective is essential for assessing disease severity, but it is not always adequately considered. We describe how a comprehensive clinical disease severity index (DSI) for inflammatory bowel disease (IBD) correlates with patient global self-assessment (PGSA).
In an individually linked parallel online survey, physicians provided the DSI, and patients provided self-assessed severity using a global question and visual analog scale (0-100) (PGSA). Mean DSI values by PGSA were calculated with 95% confidence intervals. Pearson correlation (r) and the intraclass correlation coefficient were calculated for PGSA vs DSI. Positive predictive values for identifying severe disease with PGSA categories as a reference were based on a threshold >22 points.
The primary analysis included 89 pairs (46 Crohn’s disease [CD], 43 ulcerative colitis [UC]) with strict criteria and 147 pairs when less stringent. Common reasons for exclusion were missing values for albumin or colonoscopy. Mean DSI values showed no clear trend with increasing PGSA in CD but good discrimination between moderate, severe, and very severe PGSA in UC. For PGSA on the visual analog scale, r was 0.54 for CD and 0.59 for UC (difference in means: CD 27.7, UC 13.8; intraclass correlation coefficient: CD 0.48, UC 0.58). A high DSI predicted severe disease in 76.2% of CD and 65.2% of UC.
The DSI showed good discrimination for patient-reported disease severity in UC but performed unsatisfactorily in CD. Correlations were moderate. Further refinement of the DSI is suggested to better reflect the patient perspective.
Lay Summary
The performance of an inflammatory bowel disease severity score was compared with self-perceived severity based on an individually linked online survey of patients and their physicians. Agreement and prediction of severe disease were moderate and should be improved by integrating the patients’ perspective.
