The spectrum of adult congenital heart disease in Europe: morbidity and mortality in a 5 year follow-up period
Open accessAbstract
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.
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Atrial incisions in childhood with subsequent myocardial scarring result in development of macroreentrant AT, and there is also an increased risk of pump failure, stroke and SCD.
“The atrial incisions in childhood with subsequent myocardial scarring, however, result in the development of macroreentrant AT, and there is also an increased risk of pump failure, stroke and SCD.348”
From European Heart Rhythm Association (EHRA) consensus document on the management of supraventricular arrhythmias, endorsed by Heart Rhythm Society (HRS), Asia-Pacific Heart Rhythm Society (APHRS), and Sociedad Latinoamericana de Estimulacion Cardiaca y Electrofisiologia (SOLAECE) (2017) · cites this paper as [348]
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Cites
Eisenmenger syndrome. Factors relating to deterioration and death
Daliento, L., Somerville, J., Presbitero, P., Menti, L., Prever, S. B., Rizzoli, G., & Stone, S. (1998) · European Heart Journal · doi:10.1053/euhj.1998.1046 · Cited by 522 · see citing works
Self-citationManagement of Grown Up Congenital Heart Disease
Deanfield, J. E. (2003) · European Heart Journal · doi:10.1016/s0195-668x(03)00131-3 · Cited by 517 · see citing works
Pregnancy in cyanotic congenital heart disease. Outcome of mother and fetus.
Presbitero, P., Somerville, J., Stone, S., Aruta, E., Spiegelhalter, D. J., & Rabajoli, F. (1994) · Circulation · doi:10.1161/01.cir.89.6.2673 · Cited by 515 · see citing works
Atrial Arrhythmia after Surgical Closure of Atrial Septal Defects in Adults
Gatzoulis, M. Α., Freeman, M. A., Siu, S. C., Webb, G. D., & Harris, L. (1999) · New England Journal of Medicine · doi:10.1056/nejm199903183401103 · Cited by 505 · see citing works
Self-citationNatural history of atrial septal defect.
Campbell, M. (1970) · Heart · doi:10.1136/hrt.32.6.820 · Cited by 453 · see citing works
Pradat, P., Francannet, C., Harris, J. A., & Robert, E. (2003) · Pediatric Cardiology · doi:10.1007/s00246-002-9401-6 · Cited by 359 · see citing works
Thromboembolic Complications After Fontan Operations
Rosenthal, D. N., Friedman, A. H., Kleinman, C. S., et al. (1995) · Circulation · doi:10.1161/01.cir.92.9.287 · Cited by 269 · see citing works
Diagnosis and Management of Adult Congenital Heart Disease
(2011) · Elsevier eBooks · doi:10.1016/c2009-0-54256-0 · Cited by 253 · see citing works
Pregnancy outcomes after the Fontan repair
Canobbio, M. M., Mair, D. D., van der Velde, M. E., et al. (1996) · Journal of the American College of Cardiology · doi:10.1016/0735-1097(96)00234-3 · Cited by 241 · see citing works
Therrien, J., Gatzoulis, M., Graham, T., et al. (2001) · PubMed · Cited by 208 · see citing works
Self-citationCerebrovascular events in adult patients with cyanotic congenital heart disease
Ammash, N. M., & Warnes, C. A. (1996) · Journal of the American College of Cardiology · doi:10.1016/0735-1097(96)00196-9 · Cited by 207 · see citing works
MANAGEMENT OF ADULTS WITH CONGENITAL HEART DISEASE: An Increasing Problem
Somerville, J. (1997) · Annual Review of Medicine · doi:10.1146/annurev.med.48.1.283 · Cited by 188 · see citing works
Infective endocarditis in the grown-up congenital heart (GUCH) population
Li, W. (1998) · European Heart Journal · doi:10.1053/euhj.1997.0821 · Cited by 187 · see citing works
Gabriel, H., Heger, M., Innerhofer, P., et al. (2002) · Journal of the American College of Cardiology · doi:10.1016/s0735-1097(02)01706-0 · Cited by 186 · see citing works
Risk of stroke in adults with cyanotic congenital heart disease.
Perloff, J. K., Marelli, A. J., & Miner, P. D. (1993) · Circulation · doi:10.1161/01.cir.87.6.1954 · Cited by 175 · see citing works
Therrien, J., Dore, A., Gersony, W. M., et al. (2001) · PubMed · Cited by 173 · see citing works
Survival and complication free survival in Marfan’s syndrome: implications of current guidelines
Groenink, M., Lohuis, T. A. J., Tijssen, J. G. P., Naeff, M. S. J., Hennekam, R. C. M., van der Wall, E. E., & Mulder, B. J. M. (1999) · Heart · doi:10.1136/hrt.82.4.499 · Cited by 165 · see citing works
Self-citationLong-term outcome and quality of life in adult patients after the Fontan operation
van den Bosch, A. E., Roos‐Hesselink, J. W., van Domburg, R., Bogers, A. J. J. C., Simoons, M. L., & Meijboom, F. J. (2004) · The American Journal of Cardiology · doi:10.1016/j.amjcard.2004.01.041 · Cited by 164 · see citing works
Self-citationAbnormalities in liver function and coagulation profile following the Fontan procedure
van Nieuwenhuizen, R. C., Peters, M., Lubbers, L. J., Trip, M. D., Tijssen, J. G. P., & Mulder, B. J. M. (1999) · Heart · doi:10.1136/hrt.82.1.40 · Cited by 140 · see citing works
Self-citationThe Prognosis of Atrial Septal Defect
Campbell, M., Neill, C., & Suzman, S. S. (1957) · BMJ · doi:10.1136/bmj.1.5032.1375 · Cited by 110 · see citing works
Webb, G. D., & Williams, R. G. (2001) · Journal of the American College of Cardiology · doi:10.1016/s0735-1097(01)01279-7 · Cited by 107 · see citing works
Clarkson, P. M., Wilson, N. J., Neutze, J. M., et al. (1994) · Journal of the American College of Cardiology · doi:10.1016/0735-1097(94)90562-2 · Cited by 97 · see citing works
Hematological management of the cyanotic adult with congenital heart disease
Oechslin, E. N. (2004) · International Journal of Cardiology · doi:10.1016/j.ijcard.2004.08.015 · Cited by 85 · see citing works
Self-citationInfluence of ventricular morphology on outcome after the Fontan procedure
Julsrud, P. R., Weigel, T. J., van Son, J. A., et al. (2000) · The American Journal of Cardiology · doi:10.1016/s0002-9149(00)00922-x · Cited by 83 · see citing works
van Loo, J. B., & Cörvers, F. (2004) · Research Publications (Maastricht University) · Cited by 75 · see citing works
Houyel, L., Vaksmann, G., Fournier, A., et al. (1990) · Journal of the American College of Cardiology · doi:10.1016/0735-1097(90)90557-6 · Cited by 69 · see citing works
Incidence, outcome, and risk factors for stroke after the Fontan procedure
Chun, D. S., Schamberger, M. S., Flaspohler, T., et al. (2003) · The American Journal of Cardiology · doi:10.1016/j.amjcard.2003.09.023 · Cited by 55 · see citing works
Flagged first, then by citations
Research works printed but not linked: 2
- American College of Cardiology. Care of the adult with congenital heart disease. Presented at the 32nd Bethesda Conference, Bethesda, Maryland, 2-3 October 2000. J Am Coll Cardiol 2001;37:1161-1198.
- Therrien J, Warnes C, Daliento L, Hess J, Hoffmann A, Marelli A, Thilen U, Presbitero P, Perloff J, Somerville J, Webb GD. CCS Consensus Conference 2001 update: Recommendations for the management of adults with con- genital heart disease. Part III. Can J Cardiol 2001;17:1135-1158.
Cited by
Sorted by citations
ESC Guidelines for the management of grown-up congenital heart disease (new version 2010)
Endorsed by the Association for European Paediatric Cardiology (AEPC), Authors/Task Force Members, Baumgartner, H., Bonhoeffer, P., De Groot, N. M. S., de Haan, F., Deanfield, J. E., Galie, N., Gatzoulis, M. A., Gohlke-Baerwolf, C., et al. (2010) · European Heart Journal · doi:10.1093/eurheartj/ehq249 · Cited by 2,331 · see citing works
Self-citationStout, K. K., Daniels, C. J., Aboulhosn, J. A., Bozkurt, B., Broberg, C. S., Colman, J. M., Crumb, S. R., Dearani, J. A., Fuller, S., Gurvitz, M., et al. (2019) · Circulation · doi:10.1161/cir.0000000000000603 · Cited by 1,602 · see citing works
Khairy, P., Van Hare, G. F., Balaji, S., Berul, C. I., Cecchin, F., Cohen, M. I., Daniels, C. J., Deal, B. J., Dearani, J. A., Groot, N. D., et al. (2014) · Heart Rhythm · doi:10.1016/j.hrthm.2014.05.009 · Cited by 709 · see citing works
2015 ACC/AHA/HRS Guideline for the Management of Adult Patients With Supraventricular Tachycardia
Page, R. L., Joglar, J. A., Caldwell, M. A., Calkins, H., Conti, J. B., Deal, B. J., Estes, N. A. M., Field, M. E., Goldberger, Z. D., Hammill, S. C., et al. (2016) · Journal of the American College of Cardiology · doi:10.1016/j.jacc.2015.08.856 · Cited by 439 · see citing works
Al-Khatib, S. M., Stevenson, W. G., Ackerman, M. J., Bryant, W. J., Callans, D. J., Curtis, A. B., Deal, B. J., Dickfeld, T., Field, M. E., Fonarow, G. C., et al. (2018) · Circulation · doi:10.1161/cir.0000000000000548 · Cited by 412 · see citing works
Katritsis, D. G., Boriani, G., Cosio, F. G., Hindricks, G., Jaïs, P., Josephson, M. E., Keegan, R., Kim, Y.-H., Knight, B. P., Kuck, K.-H., et al. (2017) · Europace · doi:10.1093/europace/euw301 · Cited by 188 · see citing works
Gallego, P., Gonzalez, A. E., Sanchez-Recalde, A., Peinado, R., Polo, L., Gomez-Rubin, C., Lopez-Sendon, J. L., & Oliver, J. M. (2012) · The American Journal of Cardiology · doi:10.1016/j.amjcard.2012.02.057 · Cited by 106 · see citing works
Koyak, Z., Kroon, B., de Groot, J. R., Wagenaar, L. J., van Dijk, A. P., Mulder, B. A., Van Gelder, I. C., Post, M. C., Mulder, B. J. M., & Bouma, B. J. (2013) · The American Journal of Cardiology · doi:10.1016/j.amjcard.2013.07.029 · Cited by 88 · see citing works
Self-citationPrognostic significance of ambulatory ECG monitoring for ventricular arrhythmias
Katritsis, D. G., Siontis, G. C. M., & Camm, A. J. (2013) · Progress in Cardiovascular Diseases · doi:10.1016/j.pcad.2013.07.005 · Cited by 44 · see citing works
- Authors
- Engelfriet, P., Boersma, E., Oechslin, E., Tijssen, J., Gatzoulis, M. A., Thilén, U., Kaemmerer, H., Moons, P., Meijboom, F., Popelová, J., Laforest, V., Hirsch, R., Daliento, L., Thaulow, E., & Mulder, B.
- Affiliations
- Amsterdam UMC Location University of Amsterdam (NL)
- Erasmus MC (NL)
- University Hospital Zurich (CH)
- University of Zurich (CH)
- Deutsches Herzzentrum München (DE)
- KU Leuven (BE)
- Rabin Medical Center (IL)
- University of Padua (IT)
- Oslo University Hospital (NO)
- Corresponding author
- Engelfriet, Peter
- ORCID
- Venue
- European Heart Journal
- Publisher
- Oxford University Press (OUP)
- Published
- 2005-07-04
- Volume
- 26
- Issue
- 21
- Pages
- 2325-2333
- ISSN
- 0195-668X (ISSN-L)
- 1522-9645
- OpenAlex
- W2103660790
- Cited by
- 413
- References
- 27
- Citations by year
- 2026: 5 · 2025: 12 · 2024: 8 · 2023: 11 · 2022: 12 · 2021: 17 · 2020: 23 · 2019: 13 · 2018: 24 · 2017: 33 · 2016: 26 · 2015: 31 · 2014: 24 · 2013: 22 · 2012: 19
- FWCI
- 11.05
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- European Heart Journal (publishedVersion)
- PubMed (publishedVersion)
- Pure Amsterdam UMC (publishedVersion)
- Zurich Open Repository and Archive (University of Zurich) (acceptedVersion, other-oa)
- reroDoc Digital Library (submittedVersion)
- Data Archiving and Networked Services (DANS) (submittedVersion)
- EUR Research Repository (Erasmus University Rotterdam) (submittedVersion)
- Lirias (submittedVersion)
- Lund University Publications (Lund University) (submittedVersion)
- mediaTUM – the media and publications repository of the Technical University Munich (Technical University Munich) (submittedVersion)
- HighWire Press Open Archive (submittedVersion)
- Zurich Open Repository and Archive (University of Zurich)
- Topics
- Health Sciences › Medicine › Epidemiology › Congenital Heart Disease Studies
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cardiovascular and Diving-Related Complications
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Molecular Biology › Congenital heart defects research
- Keywords
- adult congenital heart disease, morbidity, mortality, cyanotic congenital heart disease, Fontan circulation, cardiac arrhythmias, infective endocarditis, vascular events, functional class, long-term follow-up
- MeSH terms
- Adolescent, Adult, Aged, Ambulatory Care, Cardiovascular Agents, Data Collection, Europe, Female, Follow-Up Studies, Heart Defects, Congenital, Humans, Male, Middle Aged, Patient Acceptance of Health Care, Pregnancy, Pregnancy Complications, Cardiovascular, Survival Analysis
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