title: Long-Term Nationwide Follow-Up Study of Simple Congenital Heart Disease Diagnosed in Otherwise Healthy Children.
abstract: BACKGROUND
  Systematic follow-up is currently not recommended for patients with simple congenital heart disease; however, only a few data exist on the long-term prognosis of simple congenital heart disease.
  
  
  RESULTS
  We undertook a nationwide follow-up study of a cohort of 1241 simple congenital heart disease patients, diagnosed from 1963 through 1973, in otherwise healthy children and alive at 15 years of age. We identified 10 age- and sex-matched general population controls per patient. We followed the study population through Danish public registries from the age of 15 years up to January 1, 2013 with respect to mortality, cause of death, morbidity, and medical follow-up. The patients were followed for a total of 58 422 patient-years and had a median age at the end of follow-up of 47.4 years (interquartile range, 43.5-50.9). Mortality was increased compared with the general population, both overall (adjusted hazard ratio [aHR],1.9; 95% confidence interval [CI], 1.5-2.4)] and for patients (79%) without medical follow-up (aHR, 1.7; 95% CI, 1.3-2.2). The most common cause of death (40%) was sudden unexpected death (aHR, 4.3; 95% CI, 2.9-6.5). The incidence of critical cardiac morbidity was 3.9 per 1000 patient-years with the most frequent events being an adult (re)operation and hospitalization for heart failure or ventricular tachyarrhythmia. This corresponded to an aHR of 5.7 (95% CI, 4.6-6.9) when compared with the general population.
  
  
  CONCLUSIONS
  Patients diagnosed with simple congenital heart disease in the 1960s have substantially increased long-term mortality and cardiac morbidity compared with the general population. Further studies on the effectiveness of systematic medical follow-up programs appear warranted.
authors.affiliation: From Department of Clinical Epidemiology, Aarhus University Hospital, Denmark (J.V., H.B.L., M.O., S.P.J.); and Department of Cardiology, Rigshospitalet, University of Copenhagen, Demark (D.E.H.). videbaek@dadlnet.dk.
authors.forename: Jørgen
authors.initials: J
authors.lastname: Videbæk
authors.affiliation: From Department of Clinical Epidemiology, Aarhus University Hospital, Denmark (J.V., H.B.L., M.O., S.P.J.); and Department of Cardiology, Rigshospitalet, University of Copenhagen, Demark (D.E.H.).
authors.forename: Henning Bækgaard
authors.initials: HB
authors.lastname: Laursen
authors.affiliation: From Department of Clinical Epidemiology, Aarhus University Hospital, Denmark (J.V., H.B.L., M.O., S.P.J.); and Department of Cardiology, Rigshospitalet, University of Copenhagen, Demark (D.E.H.).
authors.forename: Morten
authors.initials: M
authors.lastname: Olsen
authors.affiliation: From Department of Clinical Epidemiology, Aarhus University Hospital, Denmark (J.V., H.B.L., M.O., S.P.J.); and Department of Cardiology, Rigshospitalet, University of Copenhagen, Demark (D.E.H.).
authors.forename: Dan Eik
authors.initials: DE
authors.lastname: Høfsten
authors.affiliation: From Department of Clinical Epidemiology, Aarhus University Hospital, Denmark (J.V., H.B.L., M.O., S.P.J.); and Department of Cardiology, Rigshospitalet, University of Copenhagen, Demark (D.E.H.).
authors.forename: Søren Paaske
authors.initials: SP
authors.lastname: Johnsen
mesh_terms: D000328:Adult; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D003718:Denmark / Q000453:epidemiology; D005260:Female; D005500:Follow-Up Studies; D006304:Health Status; D006330:Heart Defects, Congenital / Q000175:diagnosis* / Q000453:epidemiology*; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D013997:Time Factors
keywords: congenital heart disease; death, sudden; follow-up studies; heart defects, congenital; morbidity; mortality