Patient and Physician Perceptions on Living with Ulcerative Colitis: Results from Two Internet Surveys
Bibliographic record
Abstract
Table: Incidence of Renal Insufficiency and Leukopenia with 5-ASA MedicationsPurpose: To understand how the perception of the impact of ulcerative colitis (UC) on patients’ lives differs between patients and gastroenterologists. Methods: Two national internet surveys were conducted: one in patients with UC and one in gastroenterologists. Here we present selected results from these surveys. Patients with a history of colectomy were excluded. Results: 451 patients with UC (20% mild, 63% moderate, 13% severe [as informed by their physician]) and 300 gastroenterologists (unassociated with the patients) were included in the surveys. In total, 36% of patients reported having ≥6 flares per year (subjective self-definition). This number exceeded gastroenterologists’ expectations for a patient population with this distribution of disease severities. When patients were asked what being in remission meant to them, 44% believed it meant living with UC symptoms, but managing life without interruption. Although ∼55% of patients reported being prescribed 5-aminosalicylic acid (5-ASA) therapy, the gastroenterologists reported prescribing 5-ASA therapy to 87% of their patients. Both patients and gastroenterologists reported that managing UC medication is a struggle for patients (49 and 41%) and that it is difficult for patients to take medication as prescribed every day (42 and 90%). Indeed, 46% of patients admitted to not taking all of their medication in the past week, while gastroenterologists believed that 41% of their patients were not adherent. Conclusion: These surveys show important disparities between how patients and gastroenterologists perceive the impact of living with UC. Results suggest that many patients have adapted to live with their symptoms rather than acting to optimize therapy and compliance. Improvements in management strategies, education, and communication among patients and gastroenterologists are necessary.
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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 | 0.003 | 0.008 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| 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 | 0.001 | 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".