title: Screening of adults with congenital cardiac disease lost for follow-up.
abstract: OBJECTIVE
  A problem facing doctors treating adults with congenitally malformed hearts is that a significant number of these patients are lost for follow-up. The purpose of our study is to describe the medical history and clinical findings in a group of such adults that was lost for follow-up. DESIGN, SETTINGS AND PATIENTS: The Danish press ran a front-page story about adults with congenitally malformed hearts who were lost for follow-up. These patients were strongly advised to contact a center for congenital cardiac disease, and we examined all responding patients within four-weeks.
  
  
  METHODS
  We carried out a structured interview, a clinical examination, echocardiography, and measured levels of N-terminal pro brain natriuretic peptide.
  
  
  RESULTS
  The number of responders was 147. Based on the diagnosis and the findings, further follow-up was scheduled for 52 (35.4%), either because of significant residual lesions, found in 32, or the risk of late complications, judged to be present in 20. Symptoms were present in 36.5% of patients scheduled for follow-up. The presence of a heart murmur was highly predictive of the need for further follow-up but the sensitivity was too low to recommend the use of auscultation as a screening test.
  
  
  CONCLUSIONS
  A large proportion of adults with congenitally malformed hearts who are lost for follow-up require regular assessment according to a modern standard. Symptoms, signs, and measurement of natriuretic peptide cannot replace full cardiological assessment. It is a challenge for centres treating adults with congenital heart disease to find the lost group of patient with significant cardiac malformations.
authors.affiliation: Department of Cardiology, The Heart Centre, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark. kasper.iversen@dadlnet.dk
authors.forename: Kasper
authors.initials: K
authors.lastname: Iversen
authors.forename: Niels G
authors.initials: NG
authors.lastname: Vejlstrup
authors.forename: Lars
authors.initials: L
authors.lastname: Sondergaard
authors.forename: Olav W
authors.initials: OW
authors.lastname: Nielsen
mesh_terms: D000328:Adult; D001314:Auscultation / Q000379:methods*; D015415:Biomarkers / Q000097:blood; D003718:Denmark / Q000453:epidemiology; D018450:Disease Progression; D004452:Echocardiography / Q000379:methods*; D005260:Female; D005500:Follow-Up Studies; D006330:Heart Defects, Congenital / Q000097:blood / Q000175:diagnosis* / Q000453:epidemiology; D006801:Humans; D008297:Male; D008403:Mass Screening / Q000379:methods*; D008875:Middle Aged; D020097:Natriuretic Peptide, Brain / Q000097:blood*; D010349:Patient Compliance; D015995:Prevalence; D011379:Prognosis; D012189:Retrospective Studies; D012720:Severity of Illness Index; D013997:Time Factors
chemical_list: D015415:Biomarkers; D020097:Natriuretic Peptide, Brain