title: Psychosocial functioning of adults with congenital heart disease: outcomes of a 30-43 year longitudinal follow-up.
abstract: OBJECTIVE
  Investigating long-term psychosocial and emotional outcomes, 30-43 years after cardiothoracic surgery during childhood.
  
  
  METHODS
  Adult patients (N = 252, aged 33-55 years) all operated between 1968 and 1980 for atrial septal defect, ventricular septal defect, pulmonary stenosis, tetralogy of Fallot or transposition of the great arteries (TGA, all Mustard) were evaluated in the Erasmus MC. Psychosocial and emotional functioning were measured using standardized, validated questionnaires. Results in 2011 were compared with those found in 2001.
  
  
  RESULTS
  Compared with normative data, the total sample showed significant impairments on living conditions, relationships, occupational level and income, but a better quality of life and emotional functioning. Patients with moderate/complex ConHD reported significantly more physical restrictions and felt more often at a disadvantage because of their ConHD compared with those with simple ConHD. From 2001 to 2011, outcomes on biographical characteristics (living conditions, marital status and income) improved significantly, though still impairments were found.
  
  
  CONCLUSIONS
  At 30-43 year follow-up, compared to normative data, patients had a better quality of life and emotional functioning, despite impairments on occupational level and income. Compared to patients with simple defects, patients with moderate/complex ConHD scored worse on multiple outcomes, which warrants special attention for these patients.
authors.affiliation: Department of Cardiology, Erasmus Medical Center, Rotterdam, The Netherlands.
authors.forename: Petra
authors.initials: P
authors.lastname: Opić
authors.forename: Jolien W
authors.initials: JW
authors.lastname: Roos-Hesselink
authors.forename: Judith A A
authors.initials: JA
authors.lastname: Cuypers
authors.forename: Maarten
authors.initials: M
authors.lastname: Witsenburg
authors.forename: Annemien
authors.initials: A
authors.lastname: van den Bosch
authors.forename: Ron T
authors.initials: RT
authors.lastname: van Domburg
authors.forename: Ad J J C
authors.initials: AJ
authors.lastname: Bogers
authors.forename: Elisabeth M W J
authors.initials: EM
authors.lastname: Utens
mesh_terms: D000328:Adult; D006348:Cardiac Surgical Procedures / Q000523:psychology*; D005260:Female; D005500:Follow-Up Studies; D006330:Heart Defects, Congenital / Q000175:diagnosis* / Q000401:mortality / Q000601:surgery*; D006344:Heart Septal Defects, Atrial / Q000175:diagnosis / Q000601:surgery; D006345:Heart Septal Defects, Ventricular / Q000175:diagnosis / Q000601:surgery; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D011581:Psychological Tests; D011666:Pulmonary Valve Stenosis / Q000175:diagnosis / Q000601:surgery; D011788:Quality of Life / Q000523:psychology; D011795:Surveys and Questionnaires; D013771:Tetralogy of Fallot / Q000175:diagnosis / Q000601:surgery; D014188:Transposition of Great Vessels / Q000175:diagnosis / Q000601:surgery