Communicating Information Regarding IBD Remission to Patients: Evidence From a Survey of Adult Patients in the United States

Dallas W Wood; Katherine Treiman; Aileen Rivell; Welmoed K van Deen; Hilary Heyison; Mark C Mattar; Sydney Power; Alyssa Strauss; Gaurav Syal; Samantha Zullow; Orna G Ehrlich

doi:10.1093/ibd/izae201

Communicating Information Regarding IBD Remission to Patients: Evidence From a Survey of Adult Patients in the United States

Inflamm Bowel Dis. 2024 Aug 28:izae201. doi: 10.1093/ibd/izae201. Online ahead of print.

Authors

Affiliations

¹ RTI International, Research Triangle Park, NC, USA.
² Erasmus School of Health Policy and Management, Erasmus University Rotterdam, Rotterdam, The Netherlands.
³ Weill Cornell Medical Center, New York Presbyterian, New York, NY, USA.
⁴ Division of Gastroenterology, MedStar Georgetown University Hospital, Washington, DC, USA.
⁵ Department of Medicine, University of North Carolina, Chapel Hill, NC, USA.
⁶ Crohn's & Colitis Foundation, New York, NY, USA.
⁷ Division of Gastroenterology, University of California San Diego, La Jolla, CA, USA.
⁸ Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA.

PMID: 39197162
DOI: 10.1093/ibd/izae201

Abstract

Background: Previous research suggests patients living with inflammatory bowel disease (IBD) understand IBD remission differently than healthcare professionals, which could influence patient expectations and clinical outcomes. We investigated 3 questions to better understand this: (1) How do patients currently understand remission; (2) Do patients currently face any barriers to communicating with their healthcare professional about remission; and (3) Can existing educational material be improved to help patients feel more prepared to discuss remission and treatment goals with their healthcare professional?

Methods: We sent a web-based survey to adult patients with IBD in the United States. This survey included an educational experiment where patients were randomly assigned to 1 of 3 improved versions of existing educational material.

Results: In total, 1495 patients with IBD completed the survey. The majority of patients (67%) agreed that remission is possible in IBD, but there was significant diversity in how they defined it with the most common being "my symptoms are reduced" (22%) and "I am no longer experiencing any symptoms" (14%). Patients reported being able to communicate openly with their healthcare professionals. Exposure to improved educational material did not have a statistically significant effect on patients' feelings of preparedness for discussing different aspects of their care with their healthcare professionals.

Conclusions: Our study confirms that patients tend to define remission in terms of resolving symptoms. We found little evidence of barriers preventing patients from discussing remission with their healthcare professionals. This suggests that educational material could be used to resolve this discrepancy in understanding.

Keywords: Crohn’s disease; communication barriers; education materials; inflammatory bowel disease; patient-centered communication; remission; ulcerative colitis.

Plain language summary

We surveyed 1495 patients with inflammatory bowel disease (IBD). We found that patients tend to define IBD remission in terms of resolving symptoms and that there is little evidence of barriers preventing patients from discussing remission with their healthcare professionals.

Grants and funding

Crohn's & Colitis Foundation