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European Heart Journal Advance Access published online on July 4, 2005
European Heart Journal, doi:10.1093/eurheartj/ehi396
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European Heart Journal © The European Society of Cardiology 2005; all rights reserved
Received February 22, 2005
Revised June 3, 2005
Accepted June 9, 2005

Clinical research

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

Peter Engelfriet 1, Eric Boersma 2, Erwin Oechslin 3, Jan Tijssen 1, Michael A. Gatzoulis 4, Ulf Thilén 5, Harald Kaemmerer 6, Philip Moons 7, Folkert Meijboom 2, Jana Popelová 8, Valérie Laforest 9, Rafael Hirsch 10, Luciano Daliento 11, Erik Thaulow 12, and Barbara Mulder 1*

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

* To whom correspondence should be addressed.
Barbara Mulder, E-mail: b.j.mulder{at}amc.uva.nl


  Abstract

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.

Keywords: Congenital heart disease; Euro Heart Survey; Adults; Morbidity; Mortality; Baseline characteristics.
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