Experience of Ulcerative Colitis from a patient and healthcare professional perspective: Results from an international survey
Bibliographic record
Abstract
This predominantly European survey was conducted to identify and quantify the differing perspectives and perceptual gaps relating to ulcerative colitis (UC) and its management that exist between patients and healthcare professionals (HCPs). Structured, cross-sectional, Web-based questionnaires designed to assess a variety of disease indices were completed by adult patients with chronic UC and HCPs involved in the care of such patients from Canada, France, Germany, Ireland, Spain and the United Kingdom. Participants were pre-identified from patient and HCP access panels, or via custom “phone-to-Web” recruitment. Patient advocacy groups/associations were not used to source patients. Surveys were completed by 775 patients, 475 physicians and 50 nurses. Patients' self-reported UC severity and patients' perception of their physician's classification of UC severity were approximately the same (mild, 32%-33%; moderate, 53%; severe, 14%-15%). Patients reported, on average, 5.5 (self-defined) flares in the past year (4.2 of which were discussed with their physician); this was more than the typical average number anticipated by physicians (3.4 per year). Patients also rated the severity of their flares more highly than HCPs. Rankings of the most common cause of flares differed between patients (40% ranked stress first; 27% natural disease course; 21% changes from regular diet; 13% not taking preventative therapy) and HCPs (51% disease course; 28% not taking preventative therapy; 19% stress; 1% diet). Fifty-five percent of patients stated that their symptoms had affected their quality of life (QoL) over the past year, while physicians estimated that, on average, 35% of patients would have a low QoL. Patients and nurses ranked urgency as the most bothersome symptom, while physicians ranked urgency and stool frequency as equally troubling; the pain impact (bother) to patients was underestimated by HCPs. Physicians' estimates from Canada, Ireland and Spain slightly overestimated non-compliance to oral 5-aminosalicylic acid compared with patients (across all countries, 38% for physicians vs 32% for patients). Almost three-quarters of patients (72%) saw their HCP as their main source of information about UC and its treatment; however, over half (59%) did not arrange regular visits to see them. This large survey identified important differences between patients' and HCPs' perceptions of the impact of UC symptoms on patients' lives, highlighting a need for enhanced communication. Most notably, HCPs may underestimate the effect of UC symptoms on patients and may fail to recognize issues that are important to patients.
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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 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| 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".