A91 UNMET NEEDS OF INFLAMMATORY BOWEL DISEASE PATIENTS IN CANADA: RESULTS OF A WEB SURVEY
Notice bibliographique
Résumé
Canada has among the highest prevalences of inflammatory bowel disease (IBD) in the world, at 0.7% of the population. Educational programs are typically aimed at physicians to bridge knowledge gaps. Little is known about the gaps that exist at the patient level. To identify unmet needs in IBD care and knowledge from a patient perspective. The Gastrointestinal Society hosted a survey on its English (www.badgut.org) and French (www.mauxdeventre.org) websites from July 6 to September 4, 2018, asking patients about their views on the unmet needs in IBD. Survey links were posted on social media, boosted via ads. To qualify, survey participants had to be living in Canada and have moderate to severe IBD. Questions included a variety of topics on IBD, such as medication, health care, and day-to-day life. Four hundred and thirty-two IBD patients (81% female) responded from all provinces (56% Crohn’s disease, 42% ulcerative colitis, 7% other). When asked their ultimate goal in treating IBD, aside from finding a cure, responses included maintaining a good quality of life (36%) and achieving remission (32%). Common concerns regarding flares of disease included losing the ability to function daily (63%), pain (58%), impact on work (33%) or family (25%), and needing surgery (22%). When asked which tools offered by their gastroenterologist were most useful to them, 60% said tests and monitoring, 54% medication selection and monitoring, 39% information on treatment options, 34% explanation of treatment goals, and 29% discussions on quality of life. 56% of respondents claimed that medications currently available only somewhat control their IBD and 20% said that they do not control symptoms. 43% of respondents were concerned about the risks of surgery. 63% of respondents were somewhat concerned, concerned, or very concerned about non-medical switching from an innovator biologic to a biosimilar, and 89% were somewhat to very concerned that there were fewer biologic options for IBD than for other immune-mediated inflammatory diseases. Respondents were interested in learning more about other aspects of treatment, including diet (57%), medical cannabis (48%), and increasing support from their health care team (39%). Canadians with IBD believe their symptoms are not under control much of the time. They worry about the impact of disease flares on their day-to-day lives and want more support from their health care team. Many individuals want to learn more about how diet and medical cannabis might help. The Gastrointestinal Society received a grant from Janssen Canada.
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 | 0,001 |
| Bibliométrie | 0,002 | 0,005 |
| Études des sciences et des technologies | 0,003 | 0,001 |
| Communication savante | 0,001 | 0,001 |
| Science ouverte | 0,001 | 0,001 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,003 | 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 ».