Transitions from pediatric to adult rheumatology care for juvenile idiopathic arthritis: a patient led qualitative study
Notice bibliographique
Résumé
BACKGROUND: Juvenile idiopathic arthritis (JIA) is a childhood autoimmune disease that causes swelling and pain in at least one joint. Young people with JIA experience symptoms that persist into adulthood, and thus will undergo a transition including the o transfer of care from a pediatric rheumatologist an adult rheumatologist. Missing from the literature is research that centres the transition experience of young people with JIA in Canada. This goal of this patient-led research was to explore the experience young people with JIA through the process of transition. METHODS: Qualitative study using the Patient and Community Engaged Research (PaCER) approach. Trained patient-researchers conducted three focus groups using the Set, Collect and Reflect PaCER process. Participants, recruited via purposive and snowball sampling using research/personal networks and social media, were young people with JIA in Canada between 18 and 28 years who had experienced with the process of transition to adult care. Recordings were transcribed verbatim. Patient researchers individually coded overlapping sections of the data, and thematic analysis was conducted. RESULTS: In total, nine individuals participated in one or more focus groups. Three themes were identified, with sub-themes: preparedness for transition (readiness for the transfer of care, developing self-advocacy skills), continuity and breadth of care (changing relationships, culture shock, new responsibilities), need for support (social support, mental health support, and ongoing support needs - beyond the transfer of care. Peer support was a connecting concept in the support sub-themes. Transition was more than a change in primary physician but also a change in the care model and breadth of care provided, which was challenging for young people especially if they had insufficient information. CONCLUSIONS: Transition from pediatric to adult care in rheumatology is a significant period for young people living with JIA, and this patient-led study provided insight into the experience from the perspective of young people with JIA which is critical to informing the development of supports for patients through the process. Patients, caregivers, pediatric and adult rheumatologists and members of the multi-disciplinary care team need to collaborate in terms of resources preparing for transfer, and support throughout the transition process to ensure a successful transition 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 distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,001 | 0,001 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,000 | 0,001 |
| Études des sciences et des technologies | 0,003 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,001 | 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 tête enseignante, 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 ».