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

Dallas W Wood ¹, Katherine Treiman ¹, Aileen Rivell ¹, Welmoed K van Deen ², Hilary Heyison ³, Mark C Mattar ⁴, Sydney Power ⁵, Alyssa Strauss ⁶, Gaurav Syal ⁷, Samantha Zullow ⁸, Orna G Ehrlich ⁶

Author information

¹RTI International, Research Triangle Park, NC, USA.

²Erasmus School of Health Policy and Management, Erasmus University Rotterdam, Rotterdam, The Netherlands.

³Weill Cornell Medical Center, New York Presbyterian, New York, NY, USA.

⁴Division of Gastroenterology, MedStar Georgetown University Hospital, Washington, DC, USA.

⁵Department of Medicine, University of North Carolina, Chapel Hill, NC, USA.

⁶Crohn's & Colitis Foundation, New York, NY, USA.

⁷Division of Gastroenterology, University of California San Diego, La Jolla, CA, USA.

⁸Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA.

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.