title: The medical history of adults with complex congenital heart disease affects their social development and professional activity.
abstract: BACKGROUND
  In recent decades, advances in surgery and therapeutic catheterization have steadily increased the life expectancy and prevalence of adults with congenital heart disease (CHD).
  
  
  OBJECTIVE
  We assessed medical and psychosocial variables of adults with CHD, according to the disease complexity.
  
  
  METHODS
  We included, from a single-centre observational cohort study, 135 consecutive adults with CHD (median age of 40 years, interquartile range: 28.0-51.0) followed in our cardiology unit, who answered a questionnaire assessing daily activity and psychosocial functioning. Disease complexity was classified according to the Bethesda conference.
  
  
  RESULTS
  Cardiac malformation complexity was simple in 61 (45.2%), moderate in 50 (37.0%) and complex in 24 (17.8%) patients. Cardiac surgery had been performed in 86.5% of moderate and complex patients. Complications (such as heart failure, arrhythmia and pulmonary hypertension) were mainly observed in the complex group (P=0.003). Physical activity was lower in the complex group (no activity in 58.8%, but sport previously contraindicated in 50% of these; P=0.03). Education level tended to be lower in the complex and moderate groups than in the simple group (respectively, 31.2% and 33.3% vs. 45.7% had passed the Baccalaureate; P=0.47). The pass rate was lower in patients with complications (P=0.037) or more than one cardiac surgery (P=0.03). In the complex group, 56.3% of patients were unemployed (P=0.048).
  
  
  CONCLUSIONS
  Complexity of heart disease and medical history affect education level and employment of adults with CHD. Academic education of children with a complex defect and career counselling are important to prevent unemployment among adults with CHD.
authors.affiliation: Paediatric Cardiology Unit, Children's Hospital, Toulouse University Hospital, Toulouse, France; Department of Cardiology, Toulouse University Hospital, Toulouse, France; Inserm U1048, Institut des Maladies Métaboliques et Cardiovasculaires (I2MC), Toulouse, France. Electronic address: clement.karsenty@hotmail.fr.
authors.forename: Clement
authors.initials: C
authors.lastname: Karsenty
authors.affiliation: Department of Cardiology, Toulouse University Hospital, Toulouse, France; Inserm U1048, Institut des Maladies Métaboliques et Cardiovasculaires (I2MC), Toulouse, France.
authors.forename: Philippe
authors.initials: P
authors.lastname: Maury
authors.affiliation: Department of Cardiology, Toulouse University Hospital, Toulouse, France.
authors.forename: Nathalie
authors.initials: N
authors.lastname: Blot-Souletie
authors.affiliation: Adult Congenital Heart Disease Unit, Hôpital Européen Georges-Pompidou-Necker, AP-HP, Inserm U970-PARCC, Paris Descartes University, Paris, France.
authors.forename: Magalie
authors.initials: M
authors.lastname: Ladouceur
authors.affiliation: Department of Congenital Heart Disease Surgery, Children's Hospital, Toulouse University Hospital, Toulouse, France.
authors.forename: Bertrand
authors.initials: B
authors.lastname: Leobon
authors.affiliation: Department of Cardiology, Toulouse University Hospital, Toulouse, France.
authors.forename: Valérie
authors.initials: V
authors.lastname: Senac
authors.affiliation: Department of Cardiology, Toulouse University Hospital, Toulouse, France.
authors.forename: Pierre
authors.initials: P
authors.lastname: Mondoly
authors.affiliation: Department of Cardiology, Toulouse University Hospital, Toulouse, France.
authors.forename: Meyer
authors.initials: M
authors.lastname: Elbaz
authors.affiliation: Department of Cardiology, Toulouse University Hospital, Toulouse, France.
authors.forename: Michel
authors.initials: M
authors.lastname: Galinier
authors.affiliation: Paediatric Cardiology Unit, Children's Hospital, Toulouse University Hospital, Toulouse, France.
authors.forename: Yves
authors.initials: Y
authors.lastname: Dulac
authors.affiliation: Department of Cardiology, Toulouse University Hospital, Toulouse, France.
authors.forename: Didier
authors.initials: D
authors.lastname: Carrié
authors.affiliation: Paediatric Cardiology Unit, Children's Hospital, Toulouse University Hospital, Toulouse, France.
authors.forename: Philippe
authors.initials: P
authors.lastname: Acar
authors.affiliation: Paediatric Cardiology Unit, Children's Hospital, Toulouse University Hospital, Toulouse, France; Department of Cardiology, Toulouse University Hospital, Toulouse, France; Inserm U1048, Institut des Maladies Métaboliques et Cardiovasculaires (I2MC), Toulouse, France.
authors.forename: Sebastien
authors.initials: S
authors.lastname: Hascoet
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D006348:Cardiac Surgical Procedures; D015897:Comorbidity; D017281:Cost of Illness; D004522:Educational Status; D004651:Employment; D005260:Female; D005602:France / Q000453:epidemiology; D006306:Health Surveys; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy; D006801:Humans; D008019:Life Style; D008297:Male; D008875:Middle Aged; D009043:Motor Activity; D011446:Prospective Studies; D011788:Quality of Life; D012720:Severity of Illness Index; D012919:Social Behavior; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D014478:Unemployment; D055815:Young Adult
keywords: Adult congenital heart disease; Cardiopathie congénitale de l’adulte; Education; Lifestyle; Style de vie; Éducation