S129 A Qualitative Study Exploring Patients’ Perspective on Remission of Bowel Urgency Among Adults With Moderate to Severe Ulcerative Colitis

Abstract

Background: Ulcerative Colitis (UC) is a chronic disease characterized by inflammation of the rectum and colon. Bowel urgency, the sudden or immediate need for a bowel movement, is one of the most bothersome symptoms experienced by patients with UC. This research aimed to explore the patient experience of UC-related bowel urgency and how patients define remission of bowel urgency severity in UC. Methods: In-depth interviews were conducted in the United States with 20 adults with clinician-confirmed moderate-to-severe UC. Participants were asked to define remission of bowel urgency severity using an 11-point Numeric Rating Scale (NRS) (where 0 = no urgency and 10 = worst possible urgency). Interviews were audio-recorded, transcribed, and coded using thematic coding in NVivo. This process aims to be flexible and reflective in order to generate a broad picture of what it is like to live with bowel urgency and how participants understand the concept of remission as related to bowel urgency. Results: Twenty participants were interviewed (average age = 42.6 years old, 50% male); 14 with moderately active (70.0%) and 6 with severely active UC (30.0%). Participants were asked about times when they had been in remission in relation to bowel urgency. It became clear in the interviews that the concept of “bowel urgency remission” was not reflective of how participants described their experience. Rather, participants talked about “improvement in bowel urgency” or times when their bowel urgency had “reduced” or “gone away.” Most participants were able to describe a time in their life subsequent to being diagnosed with UC when their bowel urgency had improved (n = 18/20, 85.0%). For those who reported improvements in bowel urgency, half of them (n = 9/18, 50.0%) described a time when their bowel urgency had gone away completely. For instance, “Uh, yes. There's a time when urgency has been better like, there'll be like... there's been like a few months where like I don't have any symptoms, you know, but when I have flare-ups, that's when it's really bad” (003-003-S-H). The other half (n = 9/18, 50.0%) reported that even during moments of improved urgency, it had never gone away completely. For example, “Um, it usually doesn't go away completely. But compared to when it's really bad, like I feel better and only have to go to the bathroom like a couple times a day, compared to 10 or more” (001-009-M-H). Participants used the terms “normal” or “feeling normal” (n = 7/18, 38.9%) when talking about periods of improvement and 5 participants described feeling happier when their bowel urgency was better (n = 5/18, 27.8%). As 1 participant explained, “Well, I'll be happy that I don't have to deal with it, you know, and back to normal” (001-014-M-C). Conclusion(s): This is an important qualitative study exploring the concept of bowel urgency and how patients with moderate-to-severe UC define remission of bowel urgency. Over half of patients who experienced improvements in bowel urgency reported that bowel urgency did not completely go away.