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European Heart Journal Advance Access originally published online on April 26, 2006
European Heart Journal 2006 27(11):1324-1330; doi:10.1093/eurheartj/ehi858
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© The European Society of Cardiology 2006. All rights reserved. For Permissions, please e-mail: journals.permissions@oxfordjournals.org

Delivery of care for adult patients with congenital heart disease in Europe: results from the Euro Heart Survey

Philip Moons1,2,*, Peter Engelfriet3, Harald Kaemmerer4, Folkert J. Meijboom5, Erwin Oechslin6, Barbara J.M. Mulder3 on behalf of the Expert Committee of Euro Heart Survey on Adult Congenital Heart Disease

1 Centre for Health Services and Nursing Research, Katholieke Universiteit Leuven, Kapucijnenvoer 35/4, B-3000 Leuven, Belgium
2 Division of Congenital Cardiology, University Hospitals of Leuven, Leuven, Belgium
3 Department of Cardiology, Academic Medical Center, Amsterdam, The Netherlands
4 Klinik fur Kinderkardiologie und angeborene Herzfehler, Deutsches Herzzentrum Munchen, Germany
5 Department of Cardiology, Thoraxcenter Erasmus MC, Rotterdam, The Netherlands
6 Division of Cardiology, University Hospital, Zurich, Switzerland

Received 23 November 2004; revised 10 March 2006; accepted 17 March 2006; online publish-ahead-of-print 26 April 2006.

* *Corresponding author. Tel: +32 16-336984; Fax: +32 16-336970. E-mail address: philip.moons{at}med.kuleuven.be

See page 1268 for the editorial comment on this article (doi:10.1093/eurheartj/ehl020)

Aims The increasing number of adults with congenital heart disease (CHD) has prompted the development of recommendations for the management of these patients and for the organization of their healthcare. The aim of this report is to describe the delivery of care in Europe for adults with congenital cardiac anomalies.

Methods and results As part of the Euro Heart Survey on Adult Congenital Heart Disease, we obtained data from 71 voluntarily participating centres that detailed their care practices for these patients. Forty-eight of these centres were specialist centres and 23 were non-specialist centres. We found that only 19% of the specialist centres complied with defined standards for optimal care structure. The criteria that appeared to be most difficult for all centres to achieve were performing 50 congenital heart operations or more per year and involving nurse specialists in the care of these patients.

Conclusion This survey indicated that the provision of care in Europe for adults with congenital heart defects is suboptimal. To fully realize the benefits of cardiac surgery performed in infants and children, continuous effort must be applied by healthcare professionals in order to implement the recommendations on the organization of care for these patients.

Key Words: Congenital heart disease • Health care survey • Health personnel • Provision of care • Adult


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