COMMUNICATING NEEDS AND FEATURES OF IBD EXPERIENCES (CONFIDE) SURVEY: BURDEN AND IMPACT OF BOWEL URGENCY ON PATIENTS WITH MODERATE TO SEVERE ULCERATIVE COLITIS
Authors: Schreiber Stefan , Travis Simon , Bleakman Alison Potts , Kayhan Cem , Ellis Hilary , Hunter Theresa , Flynn Eoin , Suldecki Grzegorz , Dubinsky Marla 
Published: January 2022

BACKGROUND

Moderate-to-severe ulcerative colitis (UC) is associated with burden on quality of life (Kawalec, 2016). 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 in the United States (US), Europe, and Japan. These data focus on US patients with moderate-to-severe UC.

METHODS

An online, quantitative, cross-sectional survey was conducted (recruitment via panel) with patients with moderate-to-severe UC in the US in July 2021. Data collected included patient perspectives on their experiences with UC. Moderate-to-severe UC was defined using criteria based on previous treatment, steroid use, and/or hospitalization. Patients who reported ever experiencing symptoms were asked to report the frequency of those symptoms over the past three months.

RESULTS

- 200 (of 756 total contacted) patients (62% male, mean age 40 years) completed the survey.

- Most patients who have ever experienced bowel urgency and/or urge incontinence (bowel urgency-related accidents) report doing so at least once-weekly (79%, n=97; 58%, n=52, respectively) over the past three months (Table 1).

- Wearing a diaper/pad/protection at least once in the past three months due to fear of urge incontinence was reported by 76% (n=152) of patients with UC (Table 2). Of those patients, 47% (n=72) reported that they currently (past month) suffer from bowel urgency.

- Almost half of all patients (45%, n=90) report wearing a diaper/pad/protection due to fear of urge incontinence at least once a week (Table 2).

- A total of 77% (n=153) of patients were receiving advanced therapies (biologic or novel oral therapy). Many of these patients reported ever suffering bowel urgency, n=91, 59%, and/or urge incontinence, n=65, 42% (Table 1). Wearing a diaper/pad/protection at least once in the past three months due to fear of urge incontinence was reported by 80% (n=122) of these patients (Table 2).

CONCLUSIONS

- Bowel urgency markedly impacts the majority of patients with moderate-to-severe UC.

- Despite the young patient population, and regardless of whether they were receiving advanced therapies or not, over three quarters of the surveyed patients reported wearing diapers/pads/protection in the past three months due to fear of urge incontinence.

- Many patients who did not report bowel urgency as a current symptom still used diapers/pads/protection out of fear they will experience urge incontinence.

- Over half of patients receiving advanced therapies who have ever experienced bowel urgency and/or urge incontinence reported having these symptoms at least once a week in the last three months.

- Even if patients are not currently experiencing bowel urgency, the persistent impact of moderate-to-severe UC is demonstrated by the use of diaper/pads/other protection due to fear of urge incontinence.