Experience of Ulcerative Colitis from a patient and healthcare professional perspective: Results from an international survey
Notice bibliographique
Résumé
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.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,002 | 0,006 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,001 | 0,001 |
| Science ouverte | 0,000 | 0,001 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,002 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».