S1195 Communicating Needs and Features of IBD Experiences (CONFIDE) Survey: Patient and Healthcare Professional Perspectives on Communication Relating to Ulcerative Colitis Symptoms in Canada
Bibliographic record
Abstract
Introduction: Moderate-to-severe ulcerative colitis (UC) can be associated with impaired quality of life. 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 and elucidate any communication gaps between healthcare professionals (HCPs) and patients with moderate-to-severe UC in the United States, Europe, Japan, and Canada. These data focus on Canadian patients and HCPs. Methods: Online, quantitative, cross-sectional survey was conducted (panel recruitment) between February and April 2023 with patients diagnosed with moderate-to-severe UC and gastroenterologists (GIs) in Canada. Active disease of at least moderate severity defined using criteria based on previous treatment, steroid use, and/or hospitalization. HCPs were GIs responsible for making prescribing decisions for patients with moderate-to-severe UC. Results summarised descriptively. Results: Survey completed by 82 (373 contacted) patients (65% male, mean age 43.5 years (SD 12.6), mean time since diagnosis 6.3 years (SD 7.6, range 1-33 years)) and 53 GIs (70 contacted). The top 3 patient-reported symptoms experienced in the past month were diarrhea (39%, n=32), bowel urgency (BU, 30%, n=25), and fatigue/tiredness (29%, n=24). Among patients currently experiencing BU, 36% (n=9) discussed this at every appointment, of those that did not (n=16), 88% would like to discuss this more. 22% of patients (n=10) who have ever suffered from BU did not feel comfortable reporting BU to their GI. 85% (n=45) GIs reported they proactively discuss BU at routine appointments; 73% (n=39) thought their patients were comfortable reporting BU. GIs who reported that they do not proactively discuss BU (15%, n=8) cited the main reasons as expectation for the patient to bring it up and insufficient time (both 62%, n=5). Conclusion: A communication gap related to BU exists between patients and GIs. Most GIs report they proactively discuss BU routinely, but the majority of patients experiencing this would like to discuss it more. Among GIs that do not routinely proactively discuss BU, most believe their patients are comfortable reporting it. Patients who do not routinely discuss it would like to do so more frequently, but do not feel comfortable reporting it to their GI.
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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 | 0.001 | 0.005 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.003 |
| Science and technology studies | 0.004 | 0.001 |
| Scholarly communication | 0.002 | 0.000 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.004 | 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".