Integrating the Patient Perspective to Validate a Measure of Disease Severity in Inflammatory Bowel Disease: Online Survey of Patients and Their Physicians.

Autor:	Timmer A; Division of Epidemiology and Biometry, Department of Human Medicine, Carl von Ossietzky Universität Oldenburg, Oldenburg, Germany., Neuser J; Division of Epidemiology and Biometry, Department of Human Medicine, Carl von Ossietzky Universität Oldenburg, Oldenburg, Germany., de Sordi D; Division of Epidemiology and Biometry, Department of Human Medicine, Carl von Ossietzky Universität Oldenburg, Oldenburg, Germany., Schmidt-Lauber M; Gastroenterologische Gemeinschaftspraxis, Oldenburg, Germany., Allgayer H; Rehazentrum Bad Brückenau, Klinik Hartwald, Bad Brückenau, Germany., Reichel C; Rehazentrum Bad Brückenau, Klinik Hartwald, Bad Brückenau, Germany.; Institute for Hygiene and Public Health, Rheinische-Friedrich-Wilhelms-Universität, Bonn, Germany., Klebl F; Praxiszentrum Alte Mälzerei, Regensburg, Germany., Obermeier F; Praxiszentrum Alte Mälzerei, Regensburg, Germany., Schnoy E; Universitätsklinikum Augsburg, Augsburg, Germany., Jessen P; Gemeinschaftspraxis im Medicum, Altenholz, Germany., Morgenstern J; Evangelisches Krankenhaus Kalk, Köln, Germany., Helwig U; Internistische Praxisgemeinschaft, Oldenburg, Germany., Maaser C; Ambulanzzentrum Gastroenterologie, Klinikum Lüneburg, Lüneburg, Germany., Leifeld L; Med Klinik III, Innere und Gastroenterologie, St. Bernward Krankenhaus, Hildesheim, Germany., Schmidt S; Med Klinik III, Innere und Gastroenterologie, St. Bernward Krankenhaus, Hildesheim, Germany., Meinhardt C; Universitätsklinik für Innere Medizin, Klinikum Oldenburg, Oldenburg, Germany., Böcker U; Klinik für Innere Medizin - Gastroenterologie, Diabetologie und Hepatologie, Vivantes Klinikum Neukölln, Berlin, Germany., Arlt A; Universitätsklinik für Innere Medizin, Klinikum Oldenburg, Oldenburg, Germany.; Medizinische Klinik, Israelitisches Krankenhaus Hamburg, Hamburg, Germany., Bästlein E; Magen-Darm-Zentrum Wiener Platz, Köln, Germany., Bokemeyer A; Klinik für Gastroenterologie, Hepatologie und Transplantationsmedizin, Universitätsmedizin Essen, Essen, Germany., Preiß JC; Klinik für Innere Medizin - Gastroenterologie, Diabetologie und Hepatologie, Vivantes Klinikum Neukölln, Berlin, Germany., Otto-Sobotka F; Division of Epidemiology and Biometry, Department of Human Medicine, Carl von Ossietzky Universität Oldenburg, Oldenburg, Germany., Kaltz B; DCCV  e.V., Berlin, Germany., Sander C; DCCV  e.V., Berlin, Germany., Kruis W; Evangelisches Krankenhaus Kalk, University of Cologne, Cologne, Germany.
Jazyk:	angličtina
Zdroj:	Inflammatory bowel diseases [Inflamm Bowel Dis] 2024 Jun 29. Date of Electronic Publication: 2024 Jun 29.
DOI:	10.1093/ibd/izae127
Abstrakt:	Background: 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). Methods: 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. Results: 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. Conclusions: 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. (© The Author(s) 2024. Published by Oxford University Press on behalf of Crohn’s & Colitis Foundation. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)
Databáze:	MEDLINE
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