Background: Adolescents and young adults (YA) with chronic diseases require special care to meet their developmental and disease-related needs. Juvenile idiopathic arthritis (JIA) affects adolescents and can persist into adulthood. Physicians require training in the challenges faced by these specific age groups to facilitate transition and enhance therapeutic alliance.

Objectives: To describe the unmet needs of adolescents and YA with JIA.

Methods: A systematic review was conducted. Medline, Embase, and Cochrane Library databases were searched. Studies published in the last 40 years (January 1980-April 2024) assessing the needs of adolescents and YA with JIA were selected. This systematic review was guided by a protocol developed using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) statement and the quality of the articles was evaluated on the basis of the STROBE criteria.

Results: A total of 278 articles were collected, after discarding 15 duplicate articles, we analyzed the titles and abstracts of 263 studies. 63 articles meeting the inclusion criteria were reviewed and their content was examined. Data from 29 studies of 1913 patients were analyzed. The age range of the patients was 11-30 years and there was a predominance of patients with FR- polyarthritis and oligoarthritis. Of these studies, nine studies assessed the general needs of YAs with a view to improving their quality of life. In these nine studies, the main general needs mentioned by adolescents and YAs were mobility, (11%), future (22%), education (22%), disease management (33%), treatment (44%), social life (including family and sexual life) (55%), daily life activities (66%), patient involvement in therapeutic decisions and mental health (66%). Six studies focused on mental health needs and compassed various issues, such as the need for independence, emotional management, comparison with peers, constraint of the disease, normalizing illness, and lack of mental support. Anxiety was significantly higher in patients with JIA than in healthy controls. Studies underscored the insufficient support available, notably the inadequate training of psychologists in JIA. In this review, 4 studies focused on the physician-patient relationship expected by the patients. Patients highlighted the importance of “personalized care”, “a change of roles” and “partnership”. Patients’ reported needs did not vary according to JIA subtype. The effect of age or geographical background was not investigated.

Conclusion: This review of the literature has highlighted the different issues that need to be addressed in the follow-up of adolescents and young adults with JIA and is consistent with studies conducted in other chronic diseases. Socio-professional life and mental health are critical issues in this group of patients who are more prone to anxiety. The systematic use of questionnaires such as the HEEADSSS or the GOOD2GO could be a practical tool to address these issues in our patients. The originality of this study lies in the description of the physician-patient relationship that adolescents expect to improve adherence. A cohort dedicated to this specific population, established collaboratively by adult rheumatologists and pediatricians, would facilitate the accumulation of long-term data. This would enable a better understanding of the population’s needs, improve the physician-patient relationship and allow for tracking the evolution of clinical practice during transition.

REFERENCES: NIL.

Acknowledgements: NIL.

Disclosure of Interests: None declared.

© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ). Neither EULAR nor the publisher make any representation as to the accuracy of the content. The authors are solely responsible for the content in their abstract including accuracy of the facts, statements, results, conclusion, citing resources etc.