Do adolescents with congenital heart disease know their medical condition?

  • Mrs Elisabeth Getz, Rikshospitalet University Hospital, Norway
  • Mrs Mona Knutsen, Rikshospitalet University Hospital, Norway
  • Per Morten Fredriksen, Rikshospitalet University Hospital, Norway
  • Mr Thomas Möller, Vestfold Hospital Trust, Norway
  • Christian Neukamm, Rikshospitalet University Hospital, Norway
  • Mr Henrik Brun, Norway
  • Mr Erik Thaulow, Norway

    • Objective
    Seventy-two adolescents with congenital heart disease (CHD), born 1990-94, attended a special designed program before transfer to the GUCH service.

    Methods
    The patients’ knowledge about their disease was examined by fill-in-forms. A comprehensive medical examination was performed.

    Results
    Thirty-four had coarctation of the aorta (CoA), 22 had tetralogy of Fallot (TOF) and 16 had total cavopulmonary connection (TCPC). Only 38 % of the CoA patients knew the name of their defect. However, 75 % reported to be able to explain the mechanisms of the defect. Ninety per cent of CoA patients felt healthy and 79 % were attending sports. Of the TOF patients, 74 % knew the name of their defect, but only 63 % had knowledge about the hemodynamic impact. 79 % of the TOF patients felt healthy, but only 42 % attended sports. 69 % of the TCPC patients knew the name of their defect and only 50 % said they were able to explain the hemodynamic effect. Of the TCPC patients 56 % felt healthy and 69 % participated in sports. The program included a medical examination that led to 1 patient with CoA and 2 TOF patients having surgery. In addition, 1 CoA patient was stented.

    Conclusions
    A comprehensive medical and educational follow-up of adolescents with CHD prior to transfer to an adult department seems warranted.