AIMS: To examine the current status of care and needs of adult congenital heart disease (ACHD) services in the Central and South Eastern European (CESEE) region. METHODS AND RESULTS: We obtained data regarding the national ACHD status for 19 CESEE countries from their ACHD representative based on an extensive survey for 2017 and/or 2018. Thirteen countries reported at least one tertiary ACHD centre with a median year of centre establishment in 2007 (interquartile range 2002-2013). ACHD centres reported a median of 2114 patients under active follow-up with an annual cardiac catheter and surgical intervention volume of 49 and 40, respectively. The majority (90%) of catheter or surgical interventions were funded by government reimbursement schemes. However, all 19 countries had financial caps on a hospital level, leading to patient waiting lists and restrictions in the number of procedures that can be performed. The median number of ACHD specialists per country was 3. The majority of centres (75%) did not have ACHD specialist nurses. The six countries with no dedicated ACHD centres had lower Gross Domestic Product per capita compared to the remainder (P = 0.005). CONCLUSION: The majority of countries in CESEE now have established ACHD services with adequate infrastructure and a patient workload comparable to the rest of Europe, but important gaps still exist. ACHD care is challenged or compromised by limited financial resources, insufficient staffing levels, and reimbursement caps on essential procedures compared to Western Europe. Active advocacy and increased resources are required to address the inequalities of care across the continent.

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 Hospital London UK

Adult Congenital Heart Centre University Medical Center Ljubljana Slovenia

Cardiovascular Centre University Hospital Motol Prague Czech Republic

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 Gottsegen György Hungarian Institute of Cardiology Budapest Hungary

Department of Cardiology University Hospital St Ekaterina Sofia Bulgaria

Division for Adult Congenital Heart Disease Department of Cardiovascular Medicine University Hospital Centre Zagreb Zagreb Croatia

Division of Adult Congenital and Valvular Heart Disease Department of Cardiovascular Medicine University Hospital Muenster Muenster Germany

Erasmus Medical Center Rotterdam The Netherlands

Faculty of Medicine University of Belgrade Belgrade Serbia

Hatter Institute for Clinic of Cardiac and Vascular Diseases Faculty of Medicine Vilnius University Vilnius Lithuania

Pauls Stradins Clinical University hospital Latvian Center of Cardiology Riga University of Latvia Riga Latvia

Ukrainian Children's Cardiac Center Kyiv Ukraine

University of Medicine and Pharmacy Carol Davila Institute of Cardiovascular Diseases Prof Dr C C Iliescu Bucharest Romania

Eur J Heart Fail. 2021 Mar;23(3):454-455. doi: 10.1002/ejhf.2107. PubMed

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