Transition from Paediatric to Adult Congenital Heart Disease Care in Central and South- Eastern Europe: Current Practices and Opportunities for Improvement

Aims Transition from paediatric to adult congenital heart disease (ACHD) care is a critical determinant of lifelong disease management for individuals with CHD. However, structured transition programmes remain inconsistently implemented, and data are lacking on current practices in Central and South-Eastern European (CESEE) countries. This study aims to evaluate existing transition practices across CESEE and to identify opportunities to improve the development and implementation of structured programmes. Methods An online questionnaire was distributed to centres involved in congenital heart disease care across CESEE countries. The survey assessed centre characteristics, transition services, transfer processes, and development priorities. Responses from 60 healthcare CHD professionals representing 43 centres in 21 countries were analysed. Results A formal ACHD service was reported in 29 of 43 centres (67%), mostly established after the year 2000 (72%), caring for a median of 1,500 (IQR 782 - 4000) ACHD patients. Overall, only 10 (23%) centres reported having a formal transition programme. Transition counselling was typically delivered in a single outpatient visit, commonly involving paediatric and adult CHD physicians, but rarely nurses and psychosocial professionals (20% each). Structured transfer processes were inconsistently implemented, only half of centres monitored non-attendance at initial adult visits. In centres without formal programmes, informal counselling largely occurred at the final paediatric or first adult visit, relying on patient self-referral, and lacking follow-up. Conclusions Formal transition programmes remain limited across CESEE ACHD centres. Standardised clear pathways, investment in dedicated transition clinics, and trained workforce, are needed to improve continuity of care for adolescents with CHD.