P285 Communicating Needs and Features of IBD Experiences (CONFIDE) Survey: European and US Patient and Health Care Professional Perspectives on the Broad Impact of Bowel Urgency in Ulcerative colitis
Notice bibliographique
Résumé
Abstract Background Bowel urgency (BU) affects quality of life and psychosocial function of patients with moderate-to-severe ulcerative colitis (UC). This study used data from the Communicating Needs and Features of IBD Experiences (CONFIDE) survey to explore the patient and health care professional (HCP) perceptions on the broad impact of BU on patients’ emotions and daily lives. Methods Online, quantitative, cross-sectional surveys were conducted among patients with moderate-to-severe UC and HCPs in Europe (France, Germany, Italy, Spain, UK), the United States (US) and Japan. Data from Europe and US are presented here. A 7-point scale was used to rate the emotional impact of BU (Patients: 1=does not make me feel like this at all, 7=makes me feel like this a great deal; HCPs: 1=patients do not experience at all, 7=patients experience a great deal) and interference of BU with 12 different aspects of patients’ daily lives (Patients: 1=does not interfere, 7=interferes a great deal; HCPs: 1=no impact on patients and 7=impacts patients a great deal). Results Surveys were completed by 556 patients and 503 HCPs in Europe and 200 patients and 200 HCPs in the US. Among patients experiencing BU in the past month (Europe:30%, US:47%), most reported emotional impacts due to BU (mean rating [MR]≥4.1), as did the HCPs (MR≥5.2). In Europe, patients felt embarrassed when having to run to the bathroom due to BU (MR=5.0); HCPs reported that patients felt anxious/nervous due to BU as well as panic and embarrassment when having to run to bathroom due to BU (MR=5.8 each; Figure). In the US, similar to patients (MR=4.8), HCPs (MR=5.8) perceived their patients felt anxious/nervous due to BU. Impacts of BU on daily life were reported by patients (MR≥4.2) and HCPs (MR≥4.6). In Europe, patients reported a high impact on spontaneous activities (MR=5.1); HCPs reported a high impact on patients’ ability to travel (MR=5.8; Table). In the US, patients reported a high impact of BU on the choice (variety) and quantity of food/drinks (MR=5.2 each); HCPs perceived a high impact on patients’ spontaneous activities and ability to travel (MR=5.7 each). While most HCPs (Europe:58%, US:54%) ranked BU among top five most impactful symptoms, it was not among the top three most impactful symptoms on treatment decisions. Conclusion In both Europe and US, BU affected patients emotionally and limited their ability to travel and make spontaneous plans. Despite the broad impact of BU from both HCP and patient perspectives, with HCPs perceiving (numerically) a higher impact than patients, it was not among the top three most impactful symptoms on HCPs’ treatment decisions. Increased awareness of BU among HCPs is needed when making treatment decisions for patients with UC.
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 | 0,004 | 0,008 |
| 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 | 0,002 |
| Intégrité de la recherche | 0,000 | 0,000 |
| 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 ».