Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Aug 1;29(8):1255-1262.
doi: 10.1093/ibd/izac206.

Concordance and Discordance Between Patient-reported Remission, Patient-reported Outcomes, and Physician Global Assessment

Kendra J Kamp  1 , Stephen E Hawes  1 , Chung Sang Tse  2 , Siddharth Singh  2 , Nhu Dang  3 , Ridhima Oberai  4 , S Alandra Weaver  4 , Gil Y Melmed  5 , Corey A Siegel  6 , Welmoed K van Deen  7 ; IBD Qorus
Collaborators, Affiliations

Concordance and Discordance Between Patient-reported Remission, Patient-reported Outcomes, and Physician Global Assessment

Kendra J Kamp et al. Inflamm Bowel Dis. .

Abstract

Background: Although validated patient-reported outcome (PRO) measurements can categorize patients with inflammatory bowel disease (IBD) into clinical remission or active disease, patients may have different definitions of remission. The purpose of this study was to compare patient-defined remission to remission based on PRO measures and physician global assessment (PGA) and to understand the clinical and demographic factors associated with disagreements.

Methods: We retrospectively analyzed 3257 de-identified surveys from 2004 IBD patients who consented to participate in the Crohn's and Colitis Foundation's IBD Qorus Learning Health System between September 2019 and February 2021. We used logistic regression models with generalized estimating equations to analyze the clinical and demographic factors (eg, age, disease duration, health confidence) associated with discordance between patient-defined remission (yes/no) and PRO-defined remission for ulcerative colitis (UC; PRO2: stool frequency, rectal bleeding) and Crohn's disease (CD; PRO-3: average number of liquid stools, abdominal pain, well-being).

Results: Among patients with UC, overall concordance was 79% between patient self-report and PRO2-defined remission and 49% between patient self-report and PGA-defined remission. Among patients with CD, overall concordance was 69% between patient self-report and PRO3-defined remission and 54% between patient self-report and PGA-defined remission. Patients in PRO-defined remission were more likely to report active disease if they had IBD <5 years and low health confidence. Patients with PRO-defined active disease were more likely to report remission if they were not using prednisone and had high health confidence.

Conclusion: Discordance exists between how remission is defined by patients, PRO measures, and PGA.

Keywords: inflammatory bowel disease; patient-reported outcomes; remission.

Plain language summary

Discordance between patients’ self-reported remission and remission defined based on patient-reported outcomes was observed in 31% of Crohn’s disease visits and 21% of ulcerative colitis visits. Disease duration and health confidence were associated with discordance.

PubMed Disclaimer

Conflict of interest statement

W.v.D. consulted for the Crohn’s and Colitis Foundation. S.H. is supported by grants from the National Institutes of Health and the Bill & Melinda Gates Foundation. G.Y.M.: Consultant to Abbvie, Arena, Boehringer-Ingelheim, Bristol-Myers Squibb, Ferring, Janssen, Pfizer, Samsung Bioepis, Shield Therapeutics, Takeda, and Techlab. R.O. and S.A.W. are employees of the Crohn’s and Colitis Foundation.

References

    1. da Silva BC, Lyra AC, Rocha R, Santana GO.. Epidemiology, demographic characteristics and prognostic predictors of ulcerative colitis. World J Gastroenterol. 2014;20(28):9458–9467. doi:10.3748/wjg.v20.i28.9458 - DOI - PMC - PubMed
    1. Peyrin-Biroulet L, Reinisch W, Colombel JF, et al. . Clinical disease activity, C-reactive protein normalisation and mucosal healing in Crohn’s disease in the SONIC trial. Gut. 2014;63(1):88–95. doi:10.1136/gutjnl-2013-304984 - DOI - PubMed
    1. Modigliani R, Mary JY, Simon JF, et al. . Clinical, biological, and endoscopic picture of attacks of Crohn’s disease. ­Evolution on prednisolone. Gastroenterology. 1990;98(4):811–818. doi:10.1016/0016-5085(90)90002-i - DOI - PubMed
    1. Lewis JD, Rutgeerts P, Feagan BG, et al. . Correlation of stool frequency and abdominal pain measures with simple endoscopic score for Crohn’s disease. Inflamm Bowel Dis. 2020;26(2):304–313. doi:10.1093/ibd/izz241 - DOI - PubMed
    1. Turner D, Ricciuto A, Lewis A, et al. . STRIDE-II: An update on the selecting therapeutic targets in inflammatory bowel disease (STRIDE) initiative of the International Organization for the Study of IBD (IOIBD): determining therapeutic goals for treat-to-target strategies in IBD. Gastroenterology. 2021;160(5):1570–1583. doi:10.1053/j.gastro.2020.12.031 - DOI - PubMed

Publication types

MeSH terms

Supplementary concepts