[Young adults with autoinflammation-What can rheumatologists expect?]

Abstract

Background: Advances in diagnostics, molecular genetics and targeted treatment have optimized the management of patients with autoinflammatory diseases (AID). As increasing numbers of children and adolescents with AID survive into adulthood, the transition from pediatric to adult rheumatology care has become an important component.

Aim of the study: Presentation of the specific challenges and requirements of the transition of adolescents with AID from pediatric to adult rheumatology care and summary of current evidence and recommendations.

Material and methods: Narrative review of the literature including guidelines, consensus statements, registries, cohort studies and surveys addressing transition.

Results: Successful transition of adolescents with AID requires an early structured and multidisciplinary process that addresses medical, psychosocial and educational needs, promotes self-management and empowerment and ensures continuity of specific care. Existing transition recommendations for chronic inflammatory rheumatic diseases are generally applicable to patients with AID; however, several AID-specific features necessitate additional considerations, such as genetic causes, relevant comorbidities and often lifelong treatment strategies involving off-label treatment. The AID-specific recommendations and data on the effectiveness of structured transition programs are so far limited.

Discussion: The transition of patients with AIDs from pediatric to adult care is a complex and demanding process. Close collaboration between pediatric and adult rheumatologists as well as patient-centered transition strategies, are crucial to ensure disease control, quality of life and social participation.