Communicating Needs and Features of IBD Experiences (CONFIDE) Survey: Patient and Healthcare Professional Perspectives on Communication Relating to Ulcerative Colitis Symptoms in Canada

Introduction: Moderate-to-severe ulcerative colitis (UC) can be associated with impaired quality of life. The Communicating Needs and Features of IBD Experiences (CONFIDE) study aims to increase understanding of patients’ experiences and the impact of IBD on their lives and elucidate any communication gaps between healthcare professionals (HCPs) and patients with moderate-to-severe UC in the United States, Europe, Japan, and Canada. These data focus on Canadian patients and HCPs. Methods: Online, quantitative, cross-sectional survey was conducted (panel recruitment) between February and April 2023 with patients diagnosed with moderate-to-severe UC and gastroenterologists (GIs) in Canada. Active disease of at least moderate severity defined using criteria based on previous treatment, steroid use, and/or hospitalization. HCPs were GIs responsible for making prescribing decisions for patients with moderate-to-severe UC. Results summarised descriptively. Results: Survey completed by 82 (373 contacted) patients (65% male, mean age 43.5 years (SD 12.6), mean time since diagnosis 6.3 years (SD 7.6, range 1-33 years)) and 53 GIs (70 contacted). The top 3 patient-reported symptoms experienced in the past month were diarrhea (39%, n=32), bowel urgency (BU, 30%, n=25), and fatigue/tiredness (29%, n=24). Among patients currently experiencing BU, 36% (n=9) discussed this at every appointment, of those that did not (n=16), 88% would like to discuss this more. 22% of patients (n=10) who have ever suffered from BU did not feel comfortable reporting BU to their GI. 85% (n=45) GIs reported they proactively discuss BU at routine appointments; 73% (n=39) thought their patients were comfortable reporting BU. GIs who reported that they do not proactively discuss BU (15%, n=8) cited the main reasons as expectation for the patient to bring it up and insufficient time (both 62%, n=5). Conclusion: A communication gap related to BU exists between patients and GIs. Most GIs report they proactively discuss BU routinely, but the majority of patients experiencing this would like to discuss it more. Among GIs that do not routinely proactively discuss BU, most believe their patients are comfortable reporting it. Patients who do not routinely discuss it would like to do so more frequently, but do not feel comfortable reporting it to their GI.