S1473 European and U.S. Patient and Health Care Professional Perspectives on the Experience of Fatigue in Crohn’s Disease and Ulcerative Colitis: Communicating Needs and Features of IBD Experiences (CONFIDE) Survey
Bibliographic record
Abstract
Introduction: Fatigue is a prevalent and debilitating, yet under-recognized and under-treated, symptom among patients (pts) with Crohn’s disease (CD) or ulcerative colitis (UC). The Communicating Needs and Features of IBD Experiences (CONFIDE) study explored pt and healthcare professional (HCP) perspectives on the experience and impact of CD/UC-related symptoms in Europe (France, Germany, Italy, Spain, and UK), the United States (US), and Japan. Methods: Online, quantitative, cross-sectional surveys were conducted separately among pts with moderate-to-severe CD/UC and HCPs who make prescribing decisions for pts. Moderate-to-severe CD/UC were defined based on previous treatment, steroid use, and/or hospitalization. Descriptive statistics were used to summarize the European and US data related to fatigue. Results: A total of 547 European [55.4% male, mean age: 38.0 years (yrs)] and 215 US (54.9% male, 40.9 yrs) pts with CD and 556 European (57.4% male, 38.9 yrs) and 200 US (61.5% male, 40.4 yrs) pts with UC completed the surveys. Over 50% of all pts were receiving advanced therapies. Overall, 34.2% European and 35.8% US pts with CD, and 20.9% European and 27.5% US pts with UC reported currently experiencing fatigue (in the past month). Similar results were observed among those receiving advanced therapies. Over one-third of CD and UC pts ranked fatigue among the top 5 symptoms with greatest impact on them. Among pts currently experiencing fatigue, most did not discuss it with their HCPs at every appointment, with at least two-thirds of these pts indicating that they would like to discuss it more frequently. Surveys were completed by 503 European (70.8% male) and 200 US (78.0% male) HCPs; 92.5% were gastroenterologists/internal medicine practitioners. A minority of HCPs reported fatigue among the top 5 symptoms with greatest impact on pts. Over half of HCPs reported proactively discussing fatigue at routine pt appointments. The most common reason for not proactively discussing it was that they expected pts to bring it up if it is an issue (Table 1). Conclusion: For both pts with CD/UC, fatigue was a common and impactful symptom, despite use of advanced therapies. Most pts experiencing fatigue who did not discuss it at every HCP appointment, wanted to discuss fatigue more frequently. Although >50% HCPs reported proactive discussion of fatigue with their pts, some expected pts to bring it up. This indicates a communication gap and highlights the underappreciation of the impact of fatigue in CD/UC. Table 1. - Patient and Healthcare Professional (HCP) perspectives on the experiences and impact of CD/UC-related symptoms Crohn’s disease (CD) Ulcerative colitis (UC) Patients European US European US Patients receiving advanced therapies 63.4% (347/547) 58.1% (125/215) 54.1% (301/556) 76.5% (153/200) Patients currently experiencing fatigue:OverallThose receiving advanced therapies 34.2% (187/547)34.3% (119/347) 35.8% (77/215)36.0% (45/125) 20.9% (116/556)19.9% (60/301) 27.5% (55/200)25.5 (39/153) Patients that ranked fatigue among top 5 symptoms with greatest impact on them 44.5% (110/247) 53.0% (52/98) 55.2% (94/170) 37.5% (30/80) Patients currently experiencing fatigue who discussed fatigue at every HCP appointment 29.9% (56/187) 36.3% (28/77) 22.4% (26/116) 40.0% (22/55) Patients with fatigue who do not discuss fatigue at every visit but want to discuss it more frequently 75.6% (99/131) 67.3% (33/49) 74.4% (67/90) 66.7% (22/33) Health care professionals (HCPs) European US European US Ranked fatigue among top 5 symptoms with greatest impact on patientsProactively discussed fatigue at routine appointmentHCPs who did not proactively discuss fatigue and expected patients to bring it up 33.9% (171/503)69.4% (349/503)39.0% (60/154) 22.0% (44/200)59.5% (119/200)30.9% (25/81) 22.7% (114/503)64.6% (325/503)37.1% (66/178) 11.5% (23/200)59.0% (118/200)32.9% (27/82) CD, Crohn’s disease; UC, ulcerative colitis.
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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 | 0.007 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.001 | 0.000 |
| Insufficient payload (model declined to judge) | 0.036 | 0.007 |
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".