Adult Congenital Heart Disease patients understanding of their condition in Central and South-Eastern Europe: Current status and opportunity for addressing shortfalls and for better care.
BACKGROUND AND AIMS Adults with congenital heart disease (ACHD) knowledge regarding their heart condition is crucial for optimal long-term outcome. Previous studies from North-Western Europe showed that important gaps in ACHD knowledge still exist. This study evaluates ACHD patients' knowledge in Central and South-eastern Europe (CESEE) and aims to identify opportunities for improving life-long ACHD care and outcomes in this region. METHODS A structured survey regarding the baseline heart condition knowledge was prospectively distributed to stable ACHD patients over a one-year period (2021-2022). Patients' responses were verified by their ACHD physicians to ensure accurate background information. RESULTS Among 1650 patients (age 34.5 ±14) across 14 CESEE countries the majority 1023(62.0%) had simple congenital heart disease with at least one previous heart procedure performed 1201(72.8%); 1060(64.2%) were asymptomatic and 875(53.8%) had secondary school education. Overall, 576(34.9%) did not have basic knowledge regarding their congenital heart disease and 146(12.2%) did not have basic understanding regarding their previous heart procedure/s. Patients considered their life expectancy similar to the general population (p=0.039). Encouragingly, 962(59.5%) expressed a desire to learn more, and 929(58.1%) favoured technological integration in their care. CONCLUSIONS Significant knowledge gaps exist amongst CESEE ACHD patients regarding their heart condition. Better ACHD patient education on current health and prospects is urgently needed. The results of this study should serve for developing congenital heart disease structured transitional and educational programmes in CESEE incorporating technology for their ACHD care and education to enhance patients' health knowledge and healthy life-behaviours to positively influence their life-long prospects.