European Society of Cardiology Working Group on Adult Congenital Heart Disease and Study Group for Adult Congenital Heart Care in Central and South Eastern European Countries consensus paper: current status, provision gaps and investment required

Margarita Brida*, Iveta Šimkova, Ljiljana Jovović, Katja Prokšelj, Petra Antonová, Hajnalka Olga Balint, Lina Gumbiene, Ihor H. Lebid, Monika Komar, Pencho Kratunkov, Tamara Kovačević Preradović, Raili Ermel, Agnese Strenge, Ioan Mircea Coman, Vladislav Vukomanović, Michael A. Gatzoulis, Jolien W. Roos-Hesselink, Gerhard Paul Diller

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

5 Citations (Scopus)

Abstract

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.

Original languageEnglish
Pages (from-to)445-453
Number of pages9
JournalEuropean Journal of Heart Failure
Volume23
Issue number3
Early online date2 Nov 2020
DOIs
Publication statusPublished - Mar 2021

Fingerprint

Dive into the research topics of 'European Society of Cardiology Working Group on Adult Congenital Heart Disease and Study Group for Adult Congenital Heart Care in Central and South Eastern European Countries consensus paper: current status, provision gaps and investment required'. Together they form a unique fingerprint.

Cite this