P-231 YI Patient Experience Living with Inflammatory Bowel Disease
Notice bibliographique
Résumé
Inflammatory bowel disease (IBD) is a lifelong chronic inflammation of the digestive tract which often presents early in life. The 2 main IBD phenotypes are Crohn's disease (CD) and ulcerative Colitis (UC). The chronic relapsing nature of the disease results in lasting physical, psychological and social stress. As part of a larger study, the primary objective of this study was to examine patients' experiences and to determine challenges associated with living with IBD. Using a qualitative descriptive approach, data was collected using 5 focus group sessions with a total of 17 individuals with diagnosis of IBD. The focus group sessions were audiotaped, transcribed, coded and analyzed using thematic content analysis. Seventeen IBD patients with average age of 44, ranged from 25 to 77, (15 CD, 2 UC, 8F, 9M), with average disease duration of 19 years were included. The main theme across the 5 focus groups was: “IBD controls your life.” This was further divided into 4 sub-themes: (1) long duration from onset of symptoms to diagnosis; (2) poor experience with initial treatment; (3) lack of public knowledge of IBD requiring self-advocacy; (4) managing the psychosocial, emotional and financial impact of disease. Discussing with patients their issues with living with IBD, there were similar experiences and challenges, including lack of understanding from school and work force were reported. Initial symptoms were dismissed as attention seeking behavior, in those diagnosed during teen years. Following diagnosis, patients' main concern was choosing the right career path while effectively managing their IBD. However, advanced prearrangement of special accommodation for schoolwork, and time off from school and work for follow-up appointments continued to be a source of difficulty. Inability to hold a fulltime employment, early retirement and out of pocket expenses not covered by various funding agencies lead to financial struggles. Psychosocial impacts were often associated with the inability to travel and attend social events due to IBD-induced constraints, such as fear of pain and fear of incontinence. This often led to feelings of isolation, exclusion, and deep depression. The duration of disease of our patients' allowed them to provide useful insights into the effectiveness of modern treatments in comparison to traditional approaches. The overwhelming consensus was that current biological treatments are significantly more effective and tolerable than the use of corticosteroids and surgical intervention, which were felt by some patients, to have caused additional health problems. Despite the demographic differences in our sample size, several themes were found to be common among the 5 focus groups. The general consensus in terms of the greatest difficulties associated with living with IBD was garnering understanding from others and learning to live their lives around the disease. However, the main, unifying theme that emerged from the findings was that IBD plays a significant role in many different facets of the lives of the patients, and learning to manage and cope with the burden of symptoms and its effects on daily life becomes a lifelong process.
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 | 0,001 | 0,005 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,001 |
| Études des sciences et des technologies | 0,003 | 0,002 |
| Communication savante | 0,002 | 0,002 |
| Science ouverte | 0,001 | 0,003 |
| Intégrité de la recherche | 0,001 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,012 | 0,001 |
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 ».