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Original article
Contemporary survival of adults with congenital heart disease
  1. Teun van der Bom1,2,
  2. Barbara JM Mulder1,2,
  3. Folkert J Meijboom3,
  4. Arie PJ van Dijk4,
  5. Petronella G Pieper5,
  6. Hubert W Vliegen6,
  7. Thelma C Konings7,
  8. Aeilko H Zwinderman8,
  9. Berto J Bouma1
  1. 1Department of Cardiology, Academic Medical Center, Amsterdam, The Netherlands
  2. 2The Netherlands Heart Institute, Utrecht, The Netherlands
  3. 3Department of Cardiology, University Medical Center Utrecht, Utrecht, The Netherlands
  4. 4Department of Cardiology, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands
  5. 5Department of Cardiology, University Medical Center Groningen, Groningen, The Netherlands
  6. 6Department of Cardiology, Leiden University Medical Center, Leiden, The Netherlands
  7. 7Department of Cardiology, VU University Medical Center, Amsterdam, The Netherlands
  8. 8Department of Clinical Epidemiology and Biostatistics, Academic Medical Center, Amsterdam, The Netherlands
  1. Correspondence to Dr B J Bouma, Department of Cardiology, Academic Medical Center, Meibergdreef 9, Amsterdam 1105 AZ, The Netherlands; b.j.bouma{at}


Background Survival data that are applicable to the current population of adults with congenital heart disease (CHD) are not available.

Objectives Using an alternative survival analysis with age as the primary time scale, we assessed the contemporary survival of adult patients with CHD.

Methods Survival was assessed using prospective data of the national registry of adult patients with CHD of the Netherlands. Survival was stratified by severity and lesion, and compared with a standardised general population.

Results Mean age at inclusion was 37 years, and 49% of the study population was male. During a cumulative prospective follow-up of 90 270 patient-years in 14 327 patients, 535 deaths occurred. Median survival was 53.4 (95% CI 49.9 to 60.7), 75.4 (95% CI 72.9 to 79.1) and 84.1 (95% CI 81.9 to 87.0) years for patients with severe, moderate and mild lesions, respectively. Survival of most patients with mild lesions did not differ from the general population, while, as expected, survival of patients with severe and moderate lesions was substantially lower (<0.001).

Conclusions The present study gives insight in the contemporary survival of adults with CHD. This may aid patient counselling, timing of interventions and future research.

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