Exploring Pediatric Surgical Journeys Through Patient-Reported Outcome and Experience Measures
Notice bibliographique
Résumé
Patient-centered care in pediatric surgery focuses on involving patients and families in decision-making, employing tailored patient-reported measures, and customizing care to meet their unique needs and preferences. This thesis explores the use of Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs) to capture the perspectives of pediatric surgical patients and their families, addressing three core questions:1. How closely do parents’ and children’s reports of health outcomes and experiences align when using PROMs and PREMs?In this study a systematic review and meta-analysis were conducted, revealing that children’s and caregivers’ perspectives on health outcomes and experiences are generally aligned in pediatric surgical settings. This suggests that in situations where direct data collection with children is challenging, it may be sufficient to use parental reports alone. However, it is important to seek children’s input whenever possible.2. Can existing PREM measures be effectively adapted for use in Canadian pediatric facilities? To explore this, a PREM instrument was culturally adapted and translated with linguistic validation for the Canadian context. This process resulted in a Canadian-specific measure tailored for pediatric outpatient settings for ages 8-16 years, addressing the need for culturally and linguistically appropriate tools, and providing a more precise assessment of patient experiences within the Canadian healthcare system.3. Can an individualized PROM address gaps in assessing outcomes important to pediatric surgical patients?To investigate this, the usability of the pediatric Patient-Generated Index (pPGI) as an individualized PROM was assessed. The evaluation demonstrated that the pPGI effectively captures outcomes defined by patients themselves, uncovering aspects of their health and well-being that standardized measures might miss. This highlights the benefit of using individualized measures alongside standardized ones to gain a more comprehensive understanding of patient outcomes.This thesis contributes to our understanding of how patient-centered measures can be effectively employed in pediatric surgery. By examining the alignment between child and parent perspectives, adapting measures for various contexts, and exploring individualized tools, it highlights key opportunities for improving care. However, measuring experiences and outcomes alone is not enough. For real impact, these findings must be translated into practice.Parental reports may be sufficient in some cases, but the newly developed Canadian patient-completed PREM and the pPGI offer a unique opportunity to enhance patient-centered care. Their potential lies in guiding meaningful improvements when systematically applied. Consistently integrating these results into clinical decision-making will be essential for enhancing care quality, patient experiences, and outcomes in pediatric surgery. Future efforts should focus on embedding these measures into routine practice, ensuring their findings lead to actionable changes that benefit both patients and providers
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 | 0,055 | 0,118 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,003 |
| Bibliométrie | 0,005 | 0,007 |
| Études des sciences et des technologies | 0,001 | 0,001 |
| Communication savante | 0,003 | 0,003 |
| Science ouverte | 0,001 | 0,002 |
| Intégrité de la recherche | 0,001 | 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 ».