In order to examine the extent to which the physician-based DSI, developed by expert consensus, also reflects disease severity from the affected person's perspective, patients and their physicians will each be surveyed in parallel using online questionnaires.

The study is conducted jointly with the German Crohn's and Colitis Association (DCCV) e. V., Professor W. Kruis (Cologne) and Dr. J. Preiss (Berlin) in association with the German IBD Study Group (GISG). It is possible to report via CED specialists (physicians) as well as directly by affected persons.

The study is currently in the data collection phase. Interested patients and physicians can register themselves for participation.

Background:

Chronic inflammatory bowel disease (IBD) is characterized by a chronic course with inflammatory episodes and a variety of possible complications, some of which persist. Recently, an international group of experts developed an index of disease severity that takes into account not only the current findings but also the previous course of the disease. It is unclear to what extent this Disease Severity Index (DSI), which was developed and is to be completed by physicians, reflects the individual burden also from the point of view of those affected.

The national patient organization DCCV e. V. sees the high relevance and potential of this instrument in decisions, discussions and study planning and thus indirectly for improving the social and health situation of those affected. However, the patient perspective was not included in the development. Therefore, this study was developed on the initiative of and in cooperation with the DCCV. It is intended to examine the extent to which patients' self-assessments correspond to the physician-based results of the DSI.

• Timmer A, Neuser J, de Sordi D, Schmidt-Lauber M, Allgayer H, Reichel, C, Klebl F, Obermeier F,  Schnoy E, Jessen P, Morgenstern J, Helwig U, Maaser C, Leifeld L, Schmidt S, Meinhardt C, Böcker U, Arlt A, Bästlein E, Bokemeyer A, Preiß J, Otto-Sobotka F, Kaltz B, Sander C, Kruis W. Integrating the Patient Perspective to Validate a Measure of Disease Severity in Inflammatory Bowel Disease: Online survey of patients and their physicians (angenommen). Inflamm Bowel Dis.
• Timmer A, de Sordi D, Neuser J, Seibel K, Hensel A, Allgayer H, Reichel C, Schmidt-Lauber M, Klebl F, Obermeier F, Schnoy E, Jessen P, Helwig U, Morgenstern J, Leifeld L, Schmidt S, Meinhardt C, Arlt A, Maaser C, Bästlein E, Bokemeyer A, Graefe U, Kaltz B, Sander C, Preiß J, Kruis W. Integrating the Patient Perspective to Validate a Measure of Disease Severity in IBD; (Poster). DDW 2022, San Diego; 22.05.2022
• Timmer A, de Sordi D, Neuser J, Seibel K, Hensel A, Schmidt-Lauber M, Allgayer H, Klebl F, Obermeier F,  Jessen P, Schnoy E, Helwig U, Morgenstern J, Leifeld L, Schmidt S, Meinhardt C, Maaser C, Bästlein E, Bokemeyer A, Graefe U, Kühbacher T, Kaltz B, Sander C, Preiß J, Kruis W. Disease severity in the inflammatory bowel diseases: Do patients and physicians agree? (Poster). ECCO 2022, Wien, 18.02.2022
• Timmer A, de Sordi D, Kappen S, Hensel A, Azimi L.S, Helwig U, Morgenstern J, Schmidt-Lauber M, Koletzko L, Meinhardt C, Arlt A, Kaltz B, Sander C, Preiß J, Kruis W. Erkrankungsschwere bei CED: Einschätzung standardisierter Fallvignetten durch Betroffene im Vergleich zum arztbasierten Disease Severity Index (DSI); Beitrag (Vortrag) DGVS Konferenz Viszeralmedizin 17.09.2021
• Timmer A. IBD Severity Survey, Integration der Patientenperspektive zur Validierung des CED Disease Serverity Index (DSI). Eine Befragungsstudie von Betroffenen und ihren Ärzten; DCCV Journal Bauchredner 3/2020: 73
• Siegel CA, Whitman CB, Spiegel BMR, et al. Development of an index to define overall disease severity in IBD. Gut. 2018;67(2):244-254