title: [Quality of life of patients with total cavopulmonary anastomosis].
abstract: BACKGROUND
  Total cavo-pulmonary connection (TCPC) represents the current surgery standard for congenital univentricular heart disease (CUHD) patients. We studied the health related quality of life (HRQOL) expressed by TCPC operated patients.
  
  
  METHODS
  This transversal study is based on 24 children and 10 adult TCPC patients aged from 5 to 41 years old. The HRQOL evaluation relies on generic self report instruments such as the PedsQL 4.0 for the children and their parents, and the Duke Health profile for the adult patients. Additional questions were specifically designed for this study as well.
  
  
  CONCLUSIONS
  The estimated HRQOL is 68.15 for the children and 68.71 for their parents. In these young cases, the global HRQOL or some specific score are altered when any comorbidity or scholar difficulties are present, or when TCPC was performed more than 10 years ago. The estimated HRQOL is 74.67 in adulthood. In these patients, the young age, the lifestyle, the onset of more than 2 early complications ans the necessity of anti-arrhythmia therapy decrease various HRQOL scores. The physical handicap is considered as the major limitation for children and adult patients. Thanks to adaptative and cognitive compensatory mechanisms, such as resilience, both groups express a satisfying HRQOL assessment.
  
  
  CONCLUSIONS
  Our study indicates that TCPC provides a good HRQOL in CUHD patients despite the complex management and follow-up of these diseases, the risk of complication onset and the physical handicap usually observed.
authors.affiliation: Unité de cardiologie pédiatrique, service de pédiatrie A, hôpital d'enfants Gatien de Clocheville, CHU de Tours.
authors.forename: A
authors.initials: A
authors.lastname: Favreau
authors.forename: A
authors.initials: A
authors.lastname: Legendre
authors.forename: E
authors.initials: E
authors.lastname: Bergoënd
authors.forename: P
authors.initials: P
authors.lastname: Neville
authors.forename: M C
authors.initials: MC
authors.lastname: Vaillant
authors.forename: M
authors.initials: M
authors.lastname: Marchand
authors.forename: A
authors.initials: A
authors.lastname: Chantepie
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006304:Health Status; D018610:Heart Bypass, Right; D006330:Heart Defects, Congenital / Q000601:surgery*; D006801:Humans; D008297:Male; D011788:Quality of Life; D011795:Surveys and Questionnaires; D016896:Treatment Outcome