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European Heart Journal 2003 24(11):1035-1084; doi:10.1016/S0195-668X(03)00131-3
Copyright © 2003 by the European Society of Cardiology.
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Guidelines

Management of Grown Up Congenital Heart Disease

The Task Force on the Management of Grown Up Congenital Heart Disease of the European Society of Cardiology

Task Force members, John Deanfield, Chairperson*, Erik Thaulow, Carol Warnes, Gary Webb, Frantizek Kolbel, Andreas Hoffman, Keld Sorenson, Harald Kaemmerer, Ulf Thilen, Margreet Bink-Boelkens, Laurence Iserin, Luciano Daliento, Eric Silove{dagger}, Andrew Redington and Pascal Vouhe

ESC Committee for Practice Guidelines (CPG), Silvia Priori, Chairperson, Maria Angeles Alonso, Jean-Jacques Blanc, Andrzej Budaj, Martin Cowie, Jaap Deckers, Enrique Fernandez Burgos, John Lekakis, Bertil Lindahl, Gianfranco Mazzotta, Joao Morais, Ali Oto, Otto Smiseth and Hans Joachim Trappe

Document Reviewers, Jaap Deckers, Werner Klein, Former CPG Chairperson, Maria Angeles Alonso, Carina Blömstrom-Lundqvist, Guy de Backer, Jaromir Hradec, Gianfranco Mazzotta, Alexander Parkhomenko, Patrizia Presbitero and Adam Torbicki

Key Words: Grown-up congenital heart disease • Congenital heartdisease • Management • Specialist centres • Organization of care

The first 150 words of the full text of this article appear below.

Table of Contents

1. Introduction and background 1037
1.1. Size and composition of the GUCH population 1038
2. Organization of care 1038
2.1. Transition from paediatric to adult care 1038
2.2. Network of specialist centres with models of delivery 1039
2.2.1. An overview of the current situation 1039
2.2.2. The beginnings of a solution 1040
2.3. Delivery of patient care 1040
2.3.1. Management recommendations 1040
3. Training of practitioners in grown-up congenital heart disease 1041
4. Medical issues 1042
4.1. Ventricular function 1042
4.1.1. Echo-Doppler 1043
4.1.2. Magnetic resonance imaging 1043
4.1.3. Radionuclide studies 1043
4.1.4. Invasive-studies 1043
4.2. Arrhythmia and pacemakers 1044
4.3. Cyanosis in the GUCH patient 1045
4.3.1. Haematologic problems 1045
4.3.2. Haemostasis 1045
4.3.3. Renal function 1045
4.3.4. Gallstones 1045
4.3.5. Orthopaedic complications 1045
4.3.6. Skin 1045
4.4. Pulmonary vascular disease 1045
4.5. Infective endocarditis 1046
4.6. Imaging in adults with congenital cardiac disease 1047
4.7. . . . [Full Text of this Article]

Preamble

1. Introduction and background

1.1. Size and composition of the GUCH population
2. Organization of care

2.1. Transition from paediatric to adult care
2.2. Network of specialist centres with models of delivery
2.2.1. An overview of the current situation
2.2.2. The beginnings of a solution
2.3. Delivery of patient care
2.3.1. Management recommendations
3. Training of practitioners in grown-up congenital heart disease

4. Medical issues

4.1. Ventricular function
4.1.1. Echo-Doppler
4.1.2. Magnetic resonance imaging
4.1.3. Radionuclide studies
4.1.4. Invasive-studies
4.2. Arrhythmia and pacemakers
4.3. Cyanosis in the GUCH patient
4.3.1. Haematologic problems
4.3.2. Haemostasis
4.3.3. Renal function
4.3.4. Gallstones
4.3.5. Orthopaedic complications
4.3.6. Skin
4.4. Pulmonary vascular disease (Fig. 3)
4.5. Infective endocarditis
4.6. Imaging in adults with congenital cardiac disease
4.7. Interventional catheterization
4.7.1. Techniques
4.7.1.1. Balloon dilation
4.7.1.2. Balloon dilatation with stent implantation
4.7.1.3. Embolization and occlusion techniques
4.7.1.4. Percutaneous valve implantation
4.8. Pregnancy and GUCH
4.9. Genetic counselling and contraception in GUCH
4.9.1. Recurrence risk/genetic counselling
4.10. Comorbidity and syndromes
4.11. Emergencies – adults with congenital cardiac disease
5. Surgical issues

5.1. Cardiac surgery
5.1.1. General planning of the operation
5.1.2. Specific surgical challenges
5.1.2.1. Preservation of myocardial function
5.1.3. Blood salvage techniques
5.1.4. Redo sternotomy incision
5.1.5. Pulmonary vascular bed abnormalities
5.1.6. Aortopulmonary collateral circulation
5.2. Anaesthesia and post operative care
5.2.1. Physiology
5.2.2. Assessment
5.2.3. Anaesthetic management
5.2.4. Monitoring
5.2.5. Post anaesthesia care
5.3. Non-cardiac surgery
5.3.1. Unoperated congenital heart disease
5.3.2. Operated congenital heart disease
5.3.3. Cyanotic heart disease
5.4. Transplantation (Fig. 5)
6. Psychosocial issues (Fig. 2)

6.1. Intellectual development/education
6.2. Employment
6.3. Insurance
6.4. Physical activity/sport
6.5. Quality of life
6.6. Patient organizations
7. Specific lesions

8. Recommendations for Future Developments in Europe

8.1. Summary
8.2. Specific recommendations
9. European Society of Cardiology Staff

Appendix A: Adult congenital heart disease survival simulator


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