108: Pediatric Patient Family Engagement with Clinical Research
Notice bibliographique
Résumé
To improve health outcomes and enhance patients' health care experiences, research-based evidence is necessary for the decisions of health care professionals. Undertaking clinical research in the paediatric population, however, presents many unique legal and ethical issues. Children are considered a vulnerable population and as such, numerous methodological challenges arise in relation to their participation in research. Predictably, these difficulties may deter researchers and funding bodies, and have contributed to a dearth of high quality paediatric research. Indeed, <40% of medical decisions have the support of the required level of evidence and <50% of medicines administered during childhood have been formally studied in children. Subject recruitment is essential for conducting clinical research, yet is often perceived as the primary barrier to conducting research in the paediatric population. However, there are very few studies evaluating research uptake in a paediatric setting. The primary objective of this study was to determine how frequently paediatric patients and their families receiving care at a tertiary paediatric hospital participate in research. The secondary objectives were to explore factors that influence patient families' decisions to participate in research and how they perceived their experiences. We conducted a cross sectional study surveying families of children receiving care in a sample of clinical areas at a tertiary care paediatric hospital in the province of British Columbia, Canada. We used a self-administered questionnaire facilitated by trained interviewers. We used descriptive statistics to report the proportion of patient families that have previously been invited to participate in research, and among these, the proportion that had agreed to participate. We also report how patient families perceive research and their past experiences therein. We approached 657 families, of which 543 were enrolled (uptake rate of 82.6%). We found that 26% [95% CI 0.22 to 0.30] had previously been invited to participate in research, and 86.8% (95% CI 0.79 to 0.92) of those respondents had agreed to participate. Only a single family (1.1% [95% CI 0.00 to 0.06]) had a negative experience while previously participating in research, and 80.5% (95% CI 0.77 to 0.84) of all families were at least somewhat likely to participate in research again in the future. Despite the majority of patient families having never been invited previously to participate in research, there is a high rate of participation and willingness to partake again among those who are invited in a paediatric setting.
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 | 0,020 | 0,056 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,001 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,005 | 0,003 |
| Communication savante | 0,004 | 0,003 |
| Science ouverte | 0,001 | 0,005 |
| Intégrité de la recherche | 0,002 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,011 | 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 ».