P285 Communicating Needs and Features of IBD Experiences (CONFIDE) Survey: European and US Patient and Health Care Professional Perspectives on the Broad Impact of Bowel Urgency in Ulcerative colitis
Bibliographic record
Abstract
Abstract Background Bowel urgency (BU) affects quality of life and psychosocial function of patients with moderate-to-severe ulcerative colitis (UC). This study used data from the Communicating Needs and Features of IBD Experiences (CONFIDE) survey to explore the patient and health care professional (HCP) perceptions on the broad impact of BU on patients’ emotions and daily lives. Methods Online, quantitative, cross-sectional surveys were conducted among patients with moderate-to-severe UC and HCPs in Europe (France, Germany, Italy, Spain, UK), the United States (US) and Japan. Data from Europe and US 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 556 patients and 503 HCPs in Europe and 200 patients and 200 HCPs in the US. Among patients experiencing BU in the past month (Europe:30%, US:47%), most reported emotional impacts due to BU (mean rating [MR]≥4.1), as did the HCPs (MR≥5.2). In Europe, patients felt embarrassed when having to run to the bathroom due to BU (MR=5.0); HCPs reported that patients felt anxious/nervous due to BU as well as panic and embarrassment when having to run to bathroom due to BU (MR=5.8 each; Figure). In the US, similar to patients (MR=4.8), HCPs (MR=5.8) perceived their patients felt anxious/nervous due to BU. Impacts of BU on daily life were reported by patients (MR≥4.2) and HCPs (MR≥4.6). In Europe, patients reported a high impact on spontaneous activities (MR=5.1); HCPs reported a high impact on patients’ ability to travel (MR=5.8; Table). In the US, patients reported a high impact of BU on the choice (variety) and quantity of food/drinks (MR=5.2 each); HCPs perceived a high impact on patients’ spontaneous activities and ability to travel (MR=5.7 each). While most HCPs (Europe:58%, US:54%) ranked BU among top five most impactful symptoms, it was not among the top three most impactful symptoms on treatment decisions. Conclusion In both Europe and US, BU affected patients emotionally and limited their ability to travel and make spontaneous plans. Despite the broad impact of BU from both HCP and patient perspectives, with HCPs perceiving (numerically) a 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 needed when making treatment decisions for patients with UC.
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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 | 0.004 | 0.008 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.002 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.002 | 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".