S912 The Effect of Patients’ Current Ulcerative Colitis Disease Severity Perception on Prevalence and Experiences of Bowel Urgency: Results from the Communicating Needs and Features of IBD Experiences (CONFIDE) Survey
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Bibliographic record
Abstract
Introduction: Bowel urgency (BU) is a highly disruptive symptom among patients (pts) with ulcerative colitis (UC).1 We aim to characterize BU based on pts’ current disease severity perception (“disease perception”) of UC in the United States (US) and Europe (EU5: France, Germany, Italy, Spain, and UK). Methods: The Communicating Needs and Features of IBD Experiences (CONFIDE) survey is an online, quantitative, cross-sectional survey that was conducted among pts with UC in the US, EU5, and Japan. Survey inclusion required moderate-to-severe UC as defined by previous treatment experience, steroid use, and/or hospitalization. Pts who met the entry criteria were asked: “How severe do you think your UC is currently?” to determine their disease perception using self-ratings of mild, moderate, severe, or do not know. Descriptive statistics summarise the data. Results: A total of 200 US pts (62% males, mean age 40 years) and 556 EU5 pts (57% males, mean age 39 years) completed the survey and met study entry criteria for moderate-to-severe UC. Most pts perceived their current disease severity as moderate (71% US, 71% EU5; Table 1).Of pts who reported ever experiencing BU, 79% of US and 71% of EU5 pts had experienced BU at least once/week in past 3 months, irrespective of their disease perception ( Table 1). Of pts who reported ever experiencing BU-related accidents, 9% US, 13% EU5 in mild, 62% US, 56% EU5 in moderate, and 75% US, 57% EU5 in severe disease perception groups had BU-related accidents at least once/week in past 3 months (Table 1). A greater proportion of pts with moderate (49% US, 39% EU5) or severe (43% US, 61% EU5) disease perception reported wearing diaper/pad/protection at least once/week in past 3 months due to fear of BU-related accidents, compared to mild disease perception (14% US, 19% EU5; Table 1). Of pts who had ever experienced BU, a greater proportion of pts who indicated severe (67% US, 56% EU5) or moderate (50% US, 55% EU5) disease perception reported that they worked fewer hours due to BU vs those who indicated mild disease perception (17% US, 33% EU5; Figure 1). Conclusion: Bowel urgency, BU-related accidents, BU-related diaper/pad/protection use, and an impact of BU on work were more frequently reported among patients with moderate or severe perceptions of their disease severity compared to those with mild disease perception. BU and BU-related experiences affect a patient’s perception of UC disease severity. Reference: 1. Carpio D, et al. Eur J Gastroenterol Hepatol. 2016.Figure 1.: Impact of bowel urgency on education/work by patients’ disease perception. US: United States; EU5: France, Germany, Italy, Spain, and the UK; DP: disease perception; N=Total number of patients who had ever experienced BU. Table 1. - Experiences and frequency of bowel urgency and BU-related accidents based on patients’ disease perception US patients’ disease perception EU5 patients’ disease perception Overall Mild Moderate Severe Overall Mild Moderate Severe Patient-perceived severity of UC, N (%) 200 (100) 21 (11) 142 (71) 35 (18) 556 (100) 106 (19) 392 (71) 54 (10) Patients receiving advanced therapy, n (%) 153 (76) 8 (38) 114 (80) 30 (86) 301 (54) 42 (40) 232 (59) 27 (50) Patients who experienced BU in the past month, n (%) 94 (47) 7 (33) 63 (44) 22 (63) 165 (30) 29 (27) 118 (30) 15 (28) Patients who experienced BU-related accidents in the past month n (%) 55 (28) 4 (19) 35 (25) 14 (40) 98 (18) 6 (6) 74 (19) 15 (28) Patients wearing diaper/pad/other protection at least once a week due to fear/anticipation of BU-related accidents in the past 3 months, n (%) 90 (45) 3 (14) 70 (49) 15 (43) 206 (37) 20 (19) 151 (39) 33 (61) Deferral time before bowel movements in the past 3 days, n (%) Can wait 15 minutes or longer 28 (14) 10 (48) 15 (11) 3 (9) 112 (20) 41 (39) 50 (13) 20 (37) Needed to get to the bathroom within 5-15 minutes 104 (52) 5 (24) 75 (53) 23 (66) 273 (49) 42 (40) 216 (55) 15 (28) Needed to get to the bathroom within 2-5 minutes 45 (22) 3 (14) 37 (26) 5 (14) 114 (21) 18 (17) 83 (21) 13 (24) Needed to get to the bathroom in less than 2 minutes 17 (8) 2 (10) 13 (9) 2 (6) 43 (8) 4 (4) 34 (9) 5 (9) Unable to make it to the bathroom in time 6 (3) 1 (5) 2 (1) 2 (6) 14 (3) 1 (1) 9 (2) 1 (2) Patients who had ever experienced BU, N (%) 123 (100) 12 (100) 82 (100) 27 (100) 250 (100) 55 (100) 166 (100) 25 (100) Patients reporting BU at least once a week in the past 3 months, n (%) 97 (79) 7 (58) 67 (82) 21 (78) 177 (71) 29 (53) 128 (77) 17 (68) Patients who had ever experienced BU-related accidents, N (%) 90 (100) 11 (100) 61 (100) 16 (100) 175 (100) 31 (100) 117 (100) 23 (100) Patients reporting BU-related accidents at least once a week in the past 3 months, n (%) 52 (58) 1 (9) 38 (62) 12 (75) 85 (49) 4 (13) 65 (56) 13 (57) N= total number of patients; n= number of patients reporting the information. BU: bowel urgency; UC: ulcerative colitis; US: United States; EU5: France, Germany, Italy, Spain, and the UK. 2 US and 4 EU5 patients self-reported their UC severity as ‘Do not know’ (data not shown due to small sample size). Advanced therapy: adalimumab, infliximab, golimumab, certolizumab-pegol, vedolizumab, natalizumab, ustekinumab, and tofacitinib.
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Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.001 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.002 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 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 it