title: [Many adults with congenital heart disease are lost to follow up].
abstract: OBJECTIVE
  Identification of adults with congenital heart disease (CHD) who were lost to cardiological follow-up.
  
  
  METHODS
  Cross-sectional study.
  
  
  METHODS
  Adults with CHD and not under cardiological follow-up were asked via a nationwide publicity campaign to contact the CONCOR (CONgenital CORvitia) project group.
  
  
  RESULTS
  A total of 593 patients with mild (85%) to moderate-severe (15%) CHD were registered via the nationwide campaign. Of these patients, 66% were examined within 1 year by a cardiologist. Additional cardiac follow-up was necessary within 1 year in 22% of these patients. In 16% of the patients, new residual lesions were found; and in three of these patients the pulmonary valve required replacement.
  
  
  CONCLUSIONS
  During this comprehensive nationwide campaign it became clear that a considerable number of adults with CDH fail to receive regular cardiac care. However, after surgical correction of CHD in childhood, residual lesions are common in this population. Threatening residual lesions can be present asymptomatically. Cardiological follow-up is therefore almost always necessary, also in patients without symptoms. Patients with CHD as well as their medical care personnel need to be well informed of this.
authors.affiliation: Academisch Medisch Centrum, Afd. Cardiologie, Amsterdam, the Netherlands.
authors.forename: Jeroen C
authors.initials: JC
authors.lastname: Vis
authors.forename: Mark J
authors.initials: MJ
authors.lastname: Schuuring
authors.forename: Enno T
authors.initials: ET
authors.lastname: van der Velde
authors.forename: Lia C J M
authors.initials: LC
authors.lastname: Engelfriet-Rijk
authors.forename: Irene M
authors.initials: IM
authors.lastname: Harms
authors.forename: Sylvia
authors.initials: S
authors.lastname: Mantels
authors.forename: Berto J
authors.initials: BJ
authors.lastname: Bouma
authors.forename: Barbara J M
authors.initials: BJ
authors.lastname: Mulder
mesh_terms: D000328:Adult; D002309:Cardiology / Q000706:statistics & numerical data*; D003266:Continuity of Patient Care; D003430:Cross-Sectional Studies; D018450:Disease Progression; D005260:Female; D006330:Heart Defects, Congenital / Q000628:therapy*; D006801:Humans; D008297:Male; D012042:Registries; D013997:Time Factors