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. 2024 Nov 12;8(1):130.
doi: 10.1186/s41687-024-00800-1.

Patient perception of bowel urgency and remission in moderately to severely active Crohn's disease or ulcerative colitis: a qualitative study

Theresa Hunter Gibble  1 , Larissa Stassek  2 , Gale Harding  2 , Marissa Stefan  2 , Tsion Fikre  2 , Alison Potts Bleakman  3 , Richard Moses  3 , Marla Dubinsky  4
Affiliations

Patient perception of bowel urgency and remission in moderately to severely active Crohn's disease or ulcerative colitis: a qualitative study

Theresa Hunter Gibble et al. J Patient Rep Outcomes. .

Abstract

Background: Bowel urgency, the sudden and immediate need to have a bowel movement, is common in patients with ulcerative colitis (UC) and Crohn's disease (CD). While its impact in UC is well established, less is known about its importance in CD. Further, what level of bowel urgency control patients with UC or CD would consider to be acceptable or in remission has not been established. This qualitative study aimed to understand perceptions of bowel urgency and remission in these patients.

Methods: Semi-structured combined concept elicitation and cognitive interviews were conducted to explore how adults with moderate-to-severe UC or CD and current or recent bowel urgency think about the concept of bowel urgency and its remission. The Urgency Numeric Rating Scale (UNRS) was used to examine different levels of bowel urgency severity and to investigate what level of bowel urgency patients would consider as representing remission.

Results: Forty adults (n = 19 UC, n = 21 CD) recruited from six US sites completed the study. Sociodemographic and clinical characteristics were similar in both groups. Both groups reported impacts of bowel urgency on physical, social, professional, and emotional aspects of their lives. Most participants (n = 15 UC, n = 18 CD) reported having experienced one or more incidents of urgency-related fecal incontinence. Most participants considered remission to be a state with a normal or reduced number of bowel movements and no or less frequent bowel urgency, and they noted that remission would increase their ability to engage in daily activities without fear of fecal incontinence. Participants were able to map different levels of severity of bowel urgency to UNRS score ranges (scale: 0-10), and they indicated that a mean UNRS score of 5 (UC) or 4 (CD) would be the highest point on the NRS at which they would still consider their bowel urgency to be in remission.

Conclusions: Bowel urgency is an important issue for patients with either moderate-to-severe UC or CD, and its remission would improve their lives. Further, these patients may still consider bowel urgency to be in remission even at UNRS scores as high as 4 or 5.

Keywords: Bowel urgency; Crohn’s disease; Patient-reported outcome; Qualitative interview; Ulcerative colitis; Urgency Numeric Rating Scale.

Plain language summary

Bowel urgency is the sudden need to rush to the bathroom to have a bowel movement, which is common in people with ulcerative colitis and Crohn’s disease. We interviewed adults with moderate or severe ulcerative colitis or Crohn’s disease to better understand their experiences. They said that bowel urgency often made them feel anxious, depressed, or embarrassed and interfered with their social lives, work, and chores. Most felt that they would be in “remission” if the bowel urgency stopped or happened less often. They added that this would help them feel more relaxed and be more active. Interestingly, they would consider even a moderate amount of bowel urgency as being in “remission.” This information can help healthcare providers better understand the toll that bowel urgency takes on patients with ulcerative colitis or Crohn’s disease and better manage their treatment.

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Conflict of interest statement

Declarations Ethics approval and consent to participate All participants provided electronic or written informed consent prior to their interview. The study protocol and recruiting clinical sites were approved by Advarra (Columbia, MD), a central institutional review board (study reference number: Pro00069827). Consent for publication Not applicable. Competing interests T.H.G., A.P.B., and R.M. are employees and shareholders of Eli Lilly and Company. L.S., G.H., M.S., and T.F. are employees of Evidera, which received funding from Eli Lilly and Company to conduct this research. M.D. is a consultant/advisor for Abbvie, Abivax, Arena Pharmaceuticals, Astra Zeneca, Boehringer Ingelheim International GmbH, Bristol-Meyer Squibb, Eli Lilly and Company, F. Hoffmann-La Roche Ltd, Genentech Inc, Gilead, Janssen Pharmaceuticals, Merck, Pfizer Inc, Prometheus Biosciences, and Takeda Pharmaceuticals.

Figures

Fig. 1
Fig. 1
Number of bowel movements experienced in a “typical” (non-flare) day. Participants were asked “About how many bowel movements do you have in a usual day?” If it varied, they were asked to describe the range and then focus on the past 24 h. Most participants spontaneously provided a range for the number of bowel movements they experience per day. Therefore, the presented ranges overlap. CD, Crohn’s disease, UC ulcerative colitis
Fig. 2
Fig. 2
Severity levels mapped to the UNRS. Participants were asked “What would “no or minimal”/”mild range”/“moderate range”/“severe range” be on the 0–10 scale?” Shaded boxes represent the overall consensus for the ranges, and bars represent individual participant responses for each level. CD Crohn’s disease, UNRS Urgency Numeric Rating Scale, UC ulcerative colitis
Fig. 3
Fig. 3
Highest number chosen on UNRS that could still be considered “normal” bowel urgency. Participants were asked “What is the highest number you could choose on this scale and still consider the amount of urgency you were having to be “normal,” “controlled,” or [in remission]?” CD Crohn’s disease, UC ulcerative colitis, UNRS Urgency Numeric Rating Scale
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