Feasibility and acceptance of KIDSCREEN-52 as a screening tool for unmet needs in children with rare inflammatory diseases
Notice bibliographique
Résumé
Abstract Background Children living with rare diseases often face significant psychosocial challenges; recognizing and addressing these effectively is crucial. However, there is a paucity of comprehensive screening tools. This study aimed to assess the feasibility and acceptance of the comprehensive KIDSCREEN-52 tool in identifying unmet needs of children with rare inflammatory diseases and their caregivers and identifying factors associated with low health-related quality of life (HRQoL). Methods A prospective single-center study of consecutive pediatric patients aged 8–18 with inflammatory diseases and their caregivers was performed to assess HRQoL utilizing the multidimensional KIDSCREEN-52 self-report and proxy tool. The validated KIDSCREEN-52 tool is available in 13 languages with corresponding Norm Data. It captures HRQoL across 10 domains including 52 inquiries. HRQoL of children with rare inflammatory diseases was described utilizing the multidimensional KIDSCREEN-52 self-report and proxy tool. The feasibility and acceptability of KIDSCREEN-52 was determined using a simple, dichotomous three item acceptance tool. Factors associated with low self-reported HRQoL were explored. Results A total of 104 participants, comprising 51 pediatric patients and their 53 caregivers, were included. The patients were 35 females and 16 males, with a median age of 16 years (range: 9–18). Among them, 25 (49%) had autoinflammatory diseases, 26 (51%) had rheumatic diseases. Mean values from self-reports and proxies were consistent with the Norm Data across all domains. Self-report and proxy assessments showed high-degree agreement. Patients reported lower HRQoL levels compared to the control population in nearly all domains. Both caregivers and children expressed strong acceptance of the KIDSCREEN-52 questionnaire's clarity, relevance, and adequacy. The overall completion rate was 75%, the mean completion time 17 min (range: 10–25). Factors associated with low HRQoL included female gender, adolescent age and evidence of a rheumatic disease. Conclusion The KIDSCREEN-52 demonstrated promise as a feasible and accepted tool for capturing the HRQoL and identifying unmet needs in children with rare inflammatory diseases. Its comprehensiveness and the availability in multiple languages with corresponding Norm Data, offers a unique opportunity to implement strategies to identify and address HRQoL challenges of children with rare diseases in routine clinical care.
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 | 0,000 | 0,002 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,000 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 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 ».