Well-being in chronic pediatric inflammatory rheumatic diseases: the experience of a French healthcare network

• Published in: Orphanet journal of rare diseases Vol. 18; no. 1; p. 46
• Main Authors: El Haddad, Rita, El Asmar, Khalil, Hascoët, Chrystelle, Rossi-Semerano, Linda, Dusser, Perrine
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 07.03.2023; BioMed Central; BMC
• Subjects: Absenteeism; Adolescents; Arthritis; Biological products; Child; Child, Preschool; Children; Chronic inflammatory rheumatic diseases; Connective tissue diseases; Connective tissues; Corticosteroids; Delivery of Health Care; Distribution; Dosage and administration; Education; Enrollments; Evolution; Families & family life; Family physicians; Health aspects; Health care networks; Healthcare network; Humans; Hypnosis; Illnesses; Inflammatory diseases; ISO standards; Medical personnel; Medical research; Missing data; Occupational Therapy; Patients; Pediatrics; Prevention; Professionals; Quality of life; Questionnaires; Rare diseases; Rheumatic Diseases; Rheumatoid arthritis in children; Risk factors; Sociodemographics; Teenagers; France; Healthcare network; Children; Adolescents; Chronic inflammatory rheumatic diseases; Quality of life
• ISSN: 1750-1172; 1750-1172
• DOI: 10.1186/s13023-023-02655-z

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. 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. 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. Well-being seems associated more with the impact of chronic illness than the type of PRD underlining the importance of a comprehensive patient care.