Key points are not available for this paper at this time.
Background: Autoinflammatory diseases are diseases associated with excessive activation of innate immunity. Most continue into adulthood if they begin in childhood. The transition from pediatric to adult care is a complex process that takes place at a crucial stage in young adults' lives, leading them to take responsibility for their own health. In juvenile idiopathic arthritis, transition to adult care has been described in up to 52% of cases. Since 2016, specific transition programs have been set up at the French National Reference Center (NRC) for Adult Autoinflammatory Diseases (AIDs), which has been based at the Tenon Hospital in Paris since 2005. Objectives: The aim of this study was to evaluate the effectiveness of this center's transition program on the quality of follow-up and disease control in patients treated in childhood. Methods: A retrospective monocentric study was conducted at the Tenon AID NRC between January 2017 and July 2023. All patients with AID whose first consultation at the center was between 15 and 30 years of age were identified. Patients who had not received pediatric treatment for inflammatory diseases were excluded. Demographic, clinical and genetic data, duration of follow-up and disease control at baseline and at the end of follow-up were extracted from the medical records. Patients were classified according to the transition process in which they participated: none, if they were not referred by a pediatrician simple, if they had been referred by a referral letter joint, if there had been a consultation involving both the pediatrician and the adult physician. Patients were considered lost to follow-up if they had not been seen for more than 1 year. Regular follow-up was defined as at least one consultation per year. Results: One hundred and twelve patients were included (54 girls, 58 boys). The median age at first consultation was 18 years, ranging from 15 to 28. The following diagnoses were made: familial Mediterranean fever (n=73), unclassified autoinflammatory disease (n=20), mevalonate kinase deficiency (n=6), cryopyrinopathies (n=4), Still's disease (n=2), Behçet's disease (n=2), tumor necrosis factor receptor 1-related relapsing fever syndrome (TRAPS) and systemic granulomatosis (n=1 each). The transition process was simple in 52 patients (46%) and common in 46 patients (41%). There was no transition in 15 patients (13%). Inflammatory disease was controlled at the first visit to the adult center in 65 patients (66%). The median follow-up was 3 years 0-8 and 31 patients were lost to follow-up (28%). During follow-up, treatment was intensified in 23 patients (21%). The absence of a formal transition was associated with a later start of follow-up in the adult center and less frequent regular follow-up (pConclusion: Participation in a formal transition program was beneficial in terms of regularity of disease follow-up in adulthood. It also allowed earlier initiation of adult care and better disease control at the start of follow-up. However, neither participation in a transition program nor the type of transition was associated with better disease control during follow-up. The transition process could provide better continuity in the adult monitoring of inflammatory diseases, especially in the most common form of AID, familial Mediterranean fever. Future studies should look for pediatric risk factors for transition failure. Finally, it will be interesting to evaluate the different types of transition on the satisfaction and quality of life of young adults. REFERENCES: NIL. Acknowledgements: NIL. Disclosure of Interests: None declared.
Elhani et al. (Sat,) studied this question.