What Is the Impact of Caregiving on Quality of Life for Parents of Children with Juvenile Idiopathic Arthritis: The UCAN CAN-DU and CURE International Prospective Study
Notice bibliographique
Résumé
Objectives To describe the care-related quality of life of caregivers of children with juvenile idiopathic arthritis (JIA). Methods The Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases (UCAN CAN-DU) and CURE study captures consecutive caregiver reported data including the standardized instrument CarerQoL questionnaire. The cohort includes all subtypes of JIA, and patients across the disease trajectory from new diagnosis to starting or stopping biologics. The analytic sample included all patients with a completed CarerQOL measure at baseline. Data collected included demographics, and a standardized measure of caregiving impact, the CarerQol instrument, and questions about paid/unpaid caregiving help. The CarerQol has 6 domains (problems with physical health, mental health, daily activities, relational, financial, and caregiving fulfillment and caregiving support) and can be summarized with a utility score from 0-100 with higher numbers indicating higher impact. Descriptive analyses were performed using RStudio. Results Among 498 participants, 282 (56.5%) were from the Netherlands, and 418 (83.9%) were mothers with median age of 42 years [IQR 36.0-46.0]. Most caregivers (n=427, 85.7%) lived with a spouse/partner, and 430 (86.3%) had either university or technical/college education. In terms of employment, 200 (40.8%) worked full-time, and 195 (39.8%) part-time, while 350 (70.4%) of spouses/partners worked full-time. Physical health conditions were reported by 349 (51%) caregivers, and 110 (16%) had mental health conditions. For spouses, 211 (36%) had physical health conditions, and 48 (8%) had mental health conditions. The mean CarerQoL utility score was 81.5 (SD: 11.1), with a median of 84.2 [IQR 77.1-88.2]. In terms of domains, physical health problems were the most common (43.8%), followed by mental health problems (41.8%) and daily activity problems (41.3%). Financial problems (13.2%) and relational problems (16.9%) were less commonly reported. Conversely, 92.4% felt some or a lot of fulfillment, and 80.3% felt they had caregiving support. Other questions examined unpaid and paid help. There, 20.1% of caregivers reported receiving unpaid help from family, friends, or neighbors in the last 3 months (median 15 hours, [IQR 5-26.2]), 3.8% received paid help with childcare (median 16 hours, [IQR 5-38.5), and 17 (3.4%) received paid help with household tasks (median 12 hours, [IQR 4-20]. Conclusion The study highlights the caregiving impact experienced by caregivers of children with JIA. Despite high levels of fulfillment and support, a substantial proportion reported unmet needs. These findings underscore the importance of targeted interventions to support caregivers.
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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 | 0,002 | 0,007 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,001 | 0,001 |
| Communication savante | 0,002 | 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) | 0,001 | 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 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 ».