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European Heart Journal Advance Access originally published online on July 4, 2005
European Heart Journal 2005 26(21):2325-2333; doi:10.1093/eurheartj/ehi396
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© The European Society of Cardiology 2005. All rights reserved. For Permissions, please e-mail: journals.permissions@oxfordjournals.org

The spectrum of adult congenital heart disease in Europe: morbidity and mortality in a 5 year follow-up period

The Euro Heart Survey on adult congenital heart disease

Peter Engelfriet1, Eric Boersma2, Erwin Oechslin3, Jan Tijssen1, Michael A. Gatzoulis4,5, Ulf Thilén6, Harald Kaemmerer7, Philip Moons8, Folkert Meijboom2, Jana Popelová9, Valérie Laforest10, Rafael Hirsch11, Luciano Daliento12, Erik Thaulow13 and Barbara Mulder1,*

1Department of Cardiology, Academic Medical Centre, Amsterdam, The Netherlands
2Thoraxcenter, Erasmus MC, Rotterdam, The Netherlands
3CardioVascular Center, Division of Cardiology, University Hospital Zurich, Switzerland
4National Heart and Lung Institute, Imperial College, London, UK
5Adult Congenital Heart Centre, Royal Brompton Hospital, London, UK
6Department of Cardiology, University Hospital Lund University, Lund, Sweden
7Department of Pediatric Cardiology and Congenital Heart Disease, Deutsches Herzcentrum, Munich, Germany
8Centre for Health Services and Nursing Research, Katholieke Universiteit Leuven, Leuven, Belgium
9Department of Medicine, University Hospital Motol, Prague, Czech Republic
10Euro Heart House, Sophia-Antipolis, France
11Department of Cardiology, Rabin Medical Center, Petah Tikva, Israel
12Department of Clinical and Experimental Medicine, University of Padua, Italy
13Department of Cardiology, Rikshospitalet, Oslo, Norway

Received 22 February 2005; revised 3 June 2005; accepted 9 June 2005; online publish-ahead-of-print 4 July 2005.

* Corresponding author. Tel: +31 (0) 20 5662193; fax: +31 (0) 20 5666809. E-mail address: b.j.mulder{at}amc.uva.nl

Aims To describe clinical and demographic characteristics at baseline of a European cohort of adults with congenital heart disease (CHD) and to assess mortality and morbidity in a 5 year follow-up period.

Methods and results Data collected as part of the Euro Heart Survey on adult CHD was analysed. This entailed information transcribed from the files of 4110 patients diagnosed with one of eight congenital heart conditions (‘defects’), who consecutively visited the outpatient clinics of one of the participating centres in 1998. The patients were included retrospectively and followed until the end of 2003 for a median follow-up of 5.1 years. Notwithstanding their overall relatively good functional class and low mortality over the follow-up period, a considerable proportion of the patients had a history of endocarditis, arrhythmias, or vascular events. There were major differences between the eight defects, both in morbidity and regarding specific characteristics. Outcomes were worst in cyanotic defects and in the Fontan circulation, but a considerable proportion of the other patients also suffer from cardiac symptoms. In particular, arrhythmias are common.

Conclusion The spectrum of adult CHD in Europe emerging from this survey is one of a predominantly young population with substantial morbidity but relatively low mortality in a 5 year period.

Key Words: Congenital heart disease • Euro Heart Survey • Adults • Morbidity • Mortality • Baseline characteristics


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