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.

Adults with congenital heart disease (ACHD) represent one of the fastest-growing patient groups in cardiology globally, yet the current study shows significant knowledge gaps regarding their condition exist among ACHD patients in Central and South-Eastern European region, despite the crucial role that adequate health understanding plays in making informed life choices, adhering to medical care, and ultimately achieving the full life-long potential.In Central and South-Eastern Europe 34.9% of ACHD patients do not have basic knowledge regarding their congenital heart disease, whereas 12.2% do not have any basic understanding of their previous heart procedure/s.Interestingly, patients across different congenital heart disease complexity groups considered their life expectancy similar to the general population.

ACHD Centre Department of Cardiology and Angiology of Medical Faculty Slovak Medical University and National Institute of Cardiovascular Diseases Bratislava Slovakia

Adult Congenital Heart Centre and National Centre for Pulmonary Hypertension Royal Brompton and Harefield Hospitals Guys and St Thomas's NHS Trust London UK

Adult Congenital Heart Centre University Medical Center Ljubljana Slovenia

Cardiovascular Centre University Hospital Motol Prague Czech Republic

Clinic of Cardiac and Vascular Diseases Faculty of Medicine Vilnius University Vilnius Lithuania

Clinic of Cardiology Clinical Center Banja Luka School of Medicine University of Banja Luka Banja Luka Bosnia and Herzegovina

Department of Cardiac and Vascular Diseases Institute of Cardiology Jagiellonian University Medical College John Paul 2 Hospital Kraków Poland

Department of Cardiac surgery Tartu University Hospital Tartu Estonia

Department of Cardiology University Hospital St Ekaterina Sofia Bulgaria

Department of Medical Rehabilitation Medical Faculty University of Rijeka Croatia

Division of Cardiology Department of Medical and Surgical Sciences and Cardiovascular Research Center Magna Graecia University Catanzaro Italy

Doctoral College of Semmelweis University Semmelweis University Budapest Hungary

Gottsegen National Cardiovascular Center Budapest Hungary

National Heart and Lung Institute Imperial College London Dovehouse St London SW3 6LY United Kingdom

Pauls Stradins Clinical University Hospital Latvian Center of Cardiology 13 Pilsonu Street Riga LV 1002 Latvia

Republican Clinical Hospital Cardiosurgery department Chisinau Republic of Moldova

Special Hospital for Prevention Treatment and Rehabilitation of Cardiovascular Diseases St Stefan Ohrid North Macedonia

Ukrainian Children's Cardiac Center Kyiv Ukraine

University Clinic of Cardiology Medical faculty Skopje North Macedonia

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