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

Margarita Brida^{1

2

3}, Ihor H Lebid⁴, Katja Prokselj⁵, Nejc Pavsic⁵, Petra Antonova⁶, Monika Komar⁷, Lidia Tomkiewicz-Pająk⁷, Dorottya Kecskemeti^{8

9}, Hajnalka Olga Balint⁸, Elizabeta Srbinovska Kostovska¹⁰, Hristina Camovska Sesoska¹¹, Dovile Zebrauskiene¹², Lina Gumbiene¹², Agnese Strenge¹³, Sandra Paeglite-Pulke¹³, Tatiana Valkovicova¹⁴, Iveta Simkova¹⁴, Pencho Kratunkov¹⁵, Raili Tagen¹⁶, Elena Panfile¹⁷, Tamara Kovačević-Preradović¹⁸, Salvatore de Rosa¹⁹, Michael A Gatzoulis^{2

3}

Affiliations

¹ Department of Medical Rehabilitation, Medical Faculty, University of Rijeka, Croatia.
² Adult Congenital Heart Centre and National Centre for Pulmonary Hypertension, Royal Brompton & Harefield Hospitals, Guys & St Thomas's NHS Trust, London, UK.
³ National Heart & Lung Institute, Imperial College London Dovehouse St, London SW3 6LY, United Kingdom.
⁴ Ukrainian Children's Cardiac Center, Kyiv, Ukraine.
⁵ Adult Congenital Heart Centre, University Medical Center, Ljubljana, Slovenia.
⁶ Cardiovascular Centre, University Hospital Motol, Prague, Czech Republic.
⁷ Department of Cardiac and Vascular Diseases, Institute of Cardiology, Jagiellonian University Medical College, John Paul II Hospital, Kraków, Poland.
⁸ Gottsegen National Cardiovascular Center, Budapest, Hungary.
⁹ Doctoral College of Semmelweis University, Semmelweis University, Budapest, Hungary.
¹⁰ University Clinic of Cardiology, Medical faculty Skopje, North Macedonia.
¹¹ Special Hospital for Prevention, Treatment and Rehabilitation of Cardiovascular Diseases "St. Stefan" Ohrid, North Macedonia.
¹² Clinic of Cardiac and Vascular Diseases, Faculty of Medicine, Vilnius University, Vilnius, Lithuania.
¹³ Pauls Stradins Clinical University Hospital, Latvian Center of Cardiology, 13 Pilsonu Street, Riga LV-1002, Latvia.
¹⁴ ACHD Centre, Department of Cardiology and Angiology of Medical Faculty, Slovak Medical University and National Institute of Cardiovascular Diseases, Bratislava, Slovakia.
¹⁵ Department of Cardiology, University Hospital St. Ekaterina, Sofia, Bulgaria.
¹⁶ Department of Cardiac surgery, Tartu University Hospital, Tartu, Estonia.
¹⁷ Republican Clinical Hospital, Cardiosurgery department Chisinau, Republic of Moldova.
¹⁸ Clinic of Cardiology, Clinical Center Banja Luka, School of Medicine, University of Banja Luka, Banja Luka, Bosnia and Herzegovina.
¹⁹ Division of Cardiology, Department of Medical and Surgical Sciences, and Cardiovascular Research Center, Magna Graecia University, Catanzaro, Italy.

PMID: 40238958
DOI: 10.1093/eurjpc/zwaf207

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

Margarita Brida et al. Eur J Prev Cardiol. 2025.

. 2025 Apr 16:zwaf207.

doi: 10.1093/eurjpc/zwaf207. Online ahead of print.

Authors

Affiliations

¹ Department of Medical Rehabilitation, Medical Faculty, University of Rijeka, Croatia.
² Adult Congenital Heart Centre and National Centre for Pulmonary Hypertension, Royal Brompton & Harefield Hospitals, Guys & St Thomas's NHS Trust, London, UK.
³ National Heart & Lung Institute, Imperial College London Dovehouse St, London SW3 6LY, United Kingdom.
⁴ Ukrainian Children's Cardiac Center, Kyiv, Ukraine.
⁵ Adult Congenital Heart Centre, University Medical Center, Ljubljana, Slovenia.
⁶ Cardiovascular Centre, University Hospital Motol, Prague, Czech Republic.
⁷ Department of Cardiac and Vascular Diseases, Institute of Cardiology, Jagiellonian University Medical College, John Paul II Hospital, Kraków, Poland.
⁸ Gottsegen National Cardiovascular Center, Budapest, Hungary.
⁹ Doctoral College of Semmelweis University, Semmelweis University, Budapest, Hungary.
¹⁰ University Clinic of Cardiology, Medical faculty Skopje, North Macedonia.
¹¹ Special Hospital for Prevention, Treatment and Rehabilitation of Cardiovascular Diseases "St. Stefan" Ohrid, North Macedonia.
¹² Clinic of Cardiac and Vascular Diseases, Faculty of Medicine, Vilnius University, Vilnius, Lithuania.
¹³ Pauls Stradins Clinical University Hospital, Latvian Center of Cardiology, 13 Pilsonu Street, Riga LV-1002, Latvia.
¹⁴ ACHD Centre, Department of Cardiology and Angiology of Medical Faculty, Slovak Medical University and National Institute of Cardiovascular Diseases, Bratislava, Slovakia.
¹⁵ Department of Cardiology, University Hospital St. Ekaterina, Sofia, Bulgaria.
¹⁶ Department of Cardiac surgery, Tartu University Hospital, Tartu, Estonia.
¹⁷ Republican Clinical Hospital, Cardiosurgery department Chisinau, Republic of Moldova.
¹⁸ Clinic of Cardiology, Clinical Center Banja Luka, School of Medicine, University of Banja Luka, Banja Luka, Bosnia and Herzegovina.
¹⁹ Division of Cardiology, Department of Medical and Surgical Sciences, and Cardiovascular Research Center, Magna Graecia University, Catanzaro, Italy.

PMID: 40238958
DOI: 10.1093/eurjpc/zwaf207

Abstract

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.

Keywords: adult congenital heart disease; congenital heart disease; patient education.

Plain language summary

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.

© The Author(s) 2025. Published by Oxford University Press on behalf of the European Society of Cardiology. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.

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Adolescent and adult patients with congenital heart disease - lost in space? - The importance of transition.
Bjarnason-Wehrens B, Müller N, Paech C. Bjarnason-Wehrens B, et al. Eur J Prev Cardiol. 2025 Aug 6:zwaf493. doi: 10.1093/eurjpc/zwaf493. Online ahead of print. Eur J Prev Cardiol. 2025. PMID: 40794708 No abstract available.

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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

Affiliations

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

Authors

Affiliations

Abstract

Plain language summary

Comment in

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