CROHN’S DISEASE AND BOWEL URGENCY: US AND EUROPEAN PATIENT AND HEALTHCARE PROFESSIONAL PERSPECTIVES FROM THE COMMUNICATING NEEDS AND FEATURES OF IBD EXPERIENCES (CONFIDE) SURVEY

• DOI: 10.1093/ibd/izae282.150
• Publication Date: 2025-03-04T21:38:34Z
• Authors: David Rubin; Alison Potts Blea...; Simon Travis; Marla Dubinsky; Stefan Schreiber; Remo Panaccione; Theresa Gibble; Cem Kayhan; Tommaso Panni; Angelo Favia; Christian Atkinson; Toshifumi Hibi

Abstract

BACKGROUND Bowel urgency (BU) is a disruptive symptom for patients with Crohn’s disease (CD) and affects their quality of life. This study used data from the Communicating Needs and Features of IBD Experiences (CONFIDE) survey to explore patient and healthcare professional (HCP) perceptions of broad impact of BU on patients’ emotions and daily lives.

METHODS Online, quantitative, cross-sectional surveys were conducted in patients with moderate-to-severe CD and gastroenterology HCPs in the US, Europe (France, Germany, Italy, Spain, UK), and Japan. Data from the US and Europe are presented here. A 7-point scale was used to rate the emotional impact of BU (Patients: 1=does not make me feel like this at all, 7=makes me feel like this a great deal; HCPs: 1=patients do not experience at all, 7=patients experience a great deal) and interference of BU with 12 different aspects of patients’ daily lives (Patients: 1=does not interfere, 7=interferes a great deal; HCPs: 1=no impact on patients and 7=impacts patients a great deal).

RESULTS Surveys were completed by 215 patients and 200 HCPs in the US, and 547 patients and 503 HCPs in Europe. Among patients experiencing BU in past month (US:42%, Europe:38%), most reported emotional impacts due to BU (mean rating [MR]≥4.6), as did HCPs (MR≥5.1). In the US, patients (MR=5.1) reported panic when having to run to bathroom, and HCPs shared that view (MR=5.6). In Europe, patients felt humiliated when accidents occurred in public and frustrated when unable to participate in spontaneous activities (MR=5.3 each); HCPs reported that patients felt humiliated when accidents occurred in public, panicked and embarrassed when having to run to bathroom, and frustrated when unable to participate in spontaneous activities (MR=5.7 each; Figure). Patients (MR≥4.4) and HCPs (MR≥4.6) reported that BU affected their daily lives. In the US, patients reported impact of BU on food/drink choice (MR=5.3); HCPs reported BU affected patients’ spontaneous activities and ability to travel (MR=5.7 each). In Europe, patients reported the impact of BU on spontaneous activities, ability to plan for the future, and food/drink intake (MR=5.2 each); HCPs reported BU affected patients’ spontaneous activities and ability to travel (MR=5.7 each; Table). While HCPs reported a high daily life and emotional impact of BU on patients, it was not among the top three symptoms with the greatest impact on treatment decisions.

CONCLUSIONS In both the US and Europe, BU affected patients’ emotions and daily lives. Despite the broad impact of BU from both HCP and patient perspectives, with HCPs perceiving a numerically higher impact than patients, it was not among the top three most impactful symptoms on HCPs’ treatment decisions. Increased awareness of BU among HCPs is essential to make informed treatment decisions and address BU and its impact on patients with CD.

Figure. Perspectives of patients with moderate-to-severe CD and healthcare professionals on the emotional impact of bowel urgency Patients with moderate/severe CD who currently experience bowel urgency and HCPs were asked to rate the emotional impact of bowel urgency based on a range of mental well-being issues. Patients rated the impacts using a scale where 1=does not make me feel like this at all and 7=makes me feel like this a great deal. HCPs rated the impacts using a scale where 1=patients do not experience at all, and 7=patients experience a great deal (and where 0=no opinion). The percentages may not add up to 100% because they have been rounded off to the nearest decimal point, and some HCPs reported “no opinion” as a response to the survey question (data not shown). aOverall, 94% of European and 89% of US HCPs were gastroenterologists, the remaining being internal medicine specialists with a gastrointestinal focus, IBD nurse specialists, nurse practitioners, or physician assistants. Abbreviations: CD, Crohn’s disease; HCP, healthcare professional; SD, standard deviation; US, United States Table. Patient and HCP perception of the impact of bowel urgency on the daily lives of patients with moderate-to-severe CDa The percentages may not add up to 100% because they have been rounded off to the nearest decimal point, and some patients/HCPs reported “no opinion” or “not applicable” as a response to the survey question (data not shown).aPatients who reported experiencing bowel urgency in the last month were asked to rate the extent to which bowel urgency interferes with different aspects of everyday life using a scale where 1=does not interfere at all and 7=interferes a great deal. HCPs were asked to rate the extent to which bowel urgency impacts different aspects of everyday life of patients using a scale where 1=no impact at all and 7=impacts a great deal (and where 0=no opinion).bPatients who reported experiencing bowel urgency: Europe, N=208; US, N=91cHCPs: Europe, N=503; US, N=200; Overall, 94% of European and 89% of US HCPs were gastroenterologists, the remaining being internal medicine specialists with a gastrointestinal focus, IBD nurse specialists, nurse practitioners, or physician assistants.dPatients who rated the low impact of bowl urgency (Rating from 1 to 3)ePatients who rated the high impact of bowl urgency (Rating from 4 to 7) Abbreviations: CD, Crohn’s disease; HCP, healthcare professional; SD, standard deviation; US, United States