S855 Communicating Needs and Features of IBD Experiences (CONFIDE) Survey: Burden and Impact of Bowel Urgency is Similar in Patients With Moderate-to-Severe Crohn’s Disease and Ulcerative Colitis
Bibliographic record
Abstract
Introduction: Although bowel urgency (BU) is known to be disruptive in patients with ulcerative colitis (UC),1 its impact on patients with Crohn’s disease (CD) is unclear. This study aimed to explore the burden and impacts of BU on patients with moderate-to-severe CD compared to previously reported UC data.1 Methods: Communicating Needs and Features of IBD Experiences (CONFIDE), an online, quantitative, cross-sectional survey, explores the experiences and impacts of symptoms on lives of patients with CD or UC in the United States (US), Europe (EU5: France, Germany, Italy, Spain, and UK), and Japan.1 Moderate-to-severe CD and UC were defined using criteria based on previous treatment, steroid use, and/or hospitalization. Data from the US and EU5 are presented as descriptive statistics. Results: A total of 2706 patients were contacted, of which 215 US (55% male; mean age: 41 years) and 547 EU5 (55% male, mean age:38 years) patients with CD completed the survey. Of these, 58% US and 63% EU5 patients were receiving advanced therapies at the time of survey completion (Table 1). BU was among the top 3 most common symptoms currently (past month) experienced by US (42%) and EU5 (38%) patients with CD, similar to the findings in patients with UC (Figure 1). Most US and EU5 patients with CD reported experiencing BU and/or BU-related accidents at least once a month in the past 3 months (Table 1). Nearly half of patients with CD (US: 49%, EU5: 40%) reported wearing diaper/pad/protection at least once a week due to fear of BU-related accidents, comparable to patients with UC. For patients receiving advanced therapies, similar patterns were observed (Table 1). As reported in patients with UC, BU and BU-related accidents were among the top 3 most common CD-related reasons for declining participation in social events, work/school, and sports/physical exercise in both US and EU5 patients (Table 1). Conclusion: The impact of BU is as common in patients with moderate-to-severe CD as in those with UC,1 despite the phenotypic differences between the diseases. Even though most patients were young (aged < 55 years) and receiving advanced therapies, almost half of patients reported wearing diaper/pad/protection at least once a week due to fear of BU-related accidents in both US and EU5, demonstrating the impact of BU in patients with CD. Table 1. - Frequency of symptoms and impacts of Crohn’s disease and ulcerative colitis and most common reasons for declining daily activities Symptoms/impacts CD UC US patients, n (%) EU5 patients, n (%) US patients, n (%) EU5 patients, n (%) Frequency of symptoms/impacts in past 3 months Bowel urgency Total number of patients (N)* 126 295 123 250 At least once a week 95 (75.4) 207 (70.2) 97 (78.9) 177 (70.8) Every 2–3 weeks/monthly 25 (19.9) 58 (19.7) 17 (13.9) 45 (18) Less frequently than monthly 2 (1.6) 19 (6.4) 7 (5.7) 19 (7.6) Not in the last 3 months 4 (3.2) 11 (3.7) 2 (1.6) 9 (3.6) Bowel urgency-related accidents Total number of patients (N)† 84 202 90 175 At least once a week 51 (60.7) 90 (44.5) 52 (57.8) 85 (48.6) Every 2–3 weeks/monthly 17 (20.2) 55 (27.2) 25 (27.8) 39 (22.3) Less frequently than monthly 9 (10.7) 30 (14.9) 5 (5.6) 25 (14.3) Not in the last 3 months 7 (8.3) 27 (13.4) 8 (8.9) 26 (14.9) Diaper/pad/other protection use due to fear/anticipation of bowel urgency-related accidents Total number of patients (N) 215 547 200 556 At least once a week 105 (48.8) 216 (39.5) 90 (45.0) 206 (37) Every 2–3 weeks/monthly 36 (16.8) 111 (20.3) 47 (23.5) 155 (27.8) Less frequently than monthly 13 (6.0) 40 (7.3) 15 (7.5) 60 (10.8) Not in the last 3 months 61 (28.4) 180 (32.9) 48 (24.0) 135 (24.3) Frequency of symptoms/impacts among patients receiving advanced therapies§ in past 3 months Bowel urgency Total number of patients (N)** 76 189 91 126 At least once a week 59 (77.6) 131 (69.2) 73 (80.2) 93 (73.8) Every 2–3 weeks/monthly 16 (21.1) 40 (21.2) 12 (13.2) 25 (19.8) Less frequently than monthly 1 (1.3) 9 (4.8) 4 (4.4) 7 (5.6) Not in the last 3 months - 9 (4.8) 2 (2.2) 1 (0.8) Bowel urgency-related accidents Total number of patients (N)†† 48 138 65 90 At least once a week 27 (56.3) 70 (50.8) 42 (64.6) 47 (52.3) Every 2–3 weeks/monthly 11 (22.9) 35 (25.4) 16 (24.7) 24 (26.6) Less frequently than monthly 6 (12.5) 19 (13.8) 3 (4.6) 13 (14.4) Not in the last 3 months 4 (8.3) 14 (10.1) 4 (6.2) 6 (6.7) Diaper/pad/other protection use due to fear/anticipation of bowel urgency-related accidents Total number of patients (N)# 125 347 153 301 At least once a week 64 (51.2) 157 (45.2) 72 (47.1) 115 (38.3) Every 2–3 weeks/monthly 21 (16.8) 76 (21.9) 37 (24.1) 101 (33.5) Less frequently than monthly 5 (4) 17 (4.9) 13 (8.5) 34 (11.3) Not in the last 3 months 35 (28) 97 (28.0) 31 (20.3) 51 (16.9) Top reasons for declining daily activities Total number of patients (N) 215 547 200 556 Participating in work/school (for example, academic, professional work Bowel urgency 83 (38.6) 151 (27.6) 74 (37.0) 151 (27.2) Fear of bowel urgency-related accidents 87 (40.5) 169 (30.9) 84 (42.0) 185 (33.3) Participating in social events (for example meeting with friends or family) Bowel urgency 69 (32.1) 160 (29.3) 86 (43.0) 164 (29.5) Fear of bowel urgency-related accidents 80 (37.2) 156 (28.5) 80 (40.0) 177 (31.8) Participating in sports/physical exercise Bowel urgency 67 (31.2) 141 (25.8) 75 (37.5) 162 (29.1) Fear of bowel urgency-related accidents 84 (39.1) 146 (26.7) 71 (35.5) 156 (28.1) N=Total number of patients, n=number of patients.*Patients who had ever experienced BU.†Patients who had ever experienced BU-related accidents.§Advanced therapies included adalimumab (including biosimilars), infliximab (including biosimilars), golimumab, certolizumab pegol, vedolizumab, natalizumab, ustekinumab, and tofacitinib.**Patients who were receiving advanced therapies who had ever experienced BU.††Patients who were receiving advanced therapies who had ever experienced BU-related accidents.#Patients who were receiving advanced therapies at the time of survey completion.CD: Crohn’s disease, UC: Ulcerative colitis, US: United states of America, EU5: France, Germany, Italy, Spain, and the United Kingdom. Figure 1.: Top 3 symptoms experienced by US and EU5 patients with UC or CD in the past month. CD: Crohn’s disease, UC: Ulcerative colitis, US: United states of America, EU5: France, Germany, Italy, Spain, and the United Kingdom. 1Rubin DT, et al. Communicating Needs and Features of IBD Experiences (CONFIDE) Survey: Patient and Healthcare Professional Perspectives on Experience of Ulcerative Colitis Symptoms. 2021;116:p S7.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.002 | 0.006 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".