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

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.

Lay 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.