| Autor: |
Rita El Haddad, Khalil El Asmar, Chrystelle Hascoët, Linda Rossi-Semerano, Perrine Dusser |
| Jazyk: |
angličtina |
| Rok vydání: |
2023 |
| Předmět: |
|
| Zdroj: |
Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-9 (2023) |
| Druh dokumentu: |
article |
| ISSN: |
1750-1172 |
| DOI: |
10.1186/s13023-023-02655-z |
| Popis: |
Abstract Objective Current management of patients with pediatric rheumatic diseases (PRD) should aim at achieving the best possible well-being. To identify sociodemographic/clinical characteristics, needed paramedical services and school accommodations associated with well-being in patients at inclusion in a French health network Réseau pour les Rhumatismes Inflammatoires Pédiatriques (RESRIP) that supports coordination of the patient’s health pathway. To evaluate the evolution of well-being over time in this patients benefiting from such support. Methods Patients > 3 years old enrolled in RESRIP (2013–2020) were included. At enrollment, data were collected on sociodemographic/clinical characteristics, ongoing medications, and paramedical and educational actions to be implemented by RESRIP. Well-being during the last 6 months was reported with a standardized questionnaire at enrollment and every 6 months. A well-being score was calculated with scores ranging from 0 to 18, 18 corresponding to absolute well-being. Patients were followed up from inclusion until June 2020. Results In total, 406 patients were included and followed up for 36 months on average: 205 juvenile idiopathic arthritis, 68 connective tissue diseases, 81 auto-inflammatory diseases and 52 other diseases. The well-being score did not differ between the groups and improved significantly, by 0.04 score units, every 6 months (95% confidence interval [0.03; 0.06]). At inclusion, use of homeopathy, need for implementation of hypnosis or psychological support, occupational therapy or for adjustment of school tests were associated with worse well-being score. Conclusion Well-being seems associated more with the impact of chronic illness than the type of PRD underlining the importance of a comprehensive patient care. |
| Databáze: |
Directory of Open Access Journals |
| Externí odkaz: |
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