title: Illness understanding in adults with congenital heart disease.
abstract: BACKGROUND
  Adult patients with congenital heart disease need information regarding their clinical diagnosis, medications and side effects, endocarditis prophylaxis, reproductive issues, employment, future surveillance, treatments, and possible reoperations. Accurate understanding of chronic illness in these patients is associated with less distress, less confusion, improved satisfaction with medical care, better compliance with treatment, and a better emotional status, all key factors for good health-related quality of life. The aim of the present study was to assess the level of knowledge that adult patients with congenital heart disease followed in our Center have about their heart condition.
  
  
  METHODS
  A questionnaire on knowledge about congenital heart disease was sent by mail to 200 adults affected by a cardiac congenital disease chosen randomly from all patients regularly followed in our department.
  
  
  RESULTS
  Patients had good knowledge about the treatment received, the importance of follow-up, the prognosis of their condition, and the possibility of taking part in physical activities. The patients receiving drug treatment were moderately knowledgeable about their treatment. The anatomy of the heart defect, factors contributing to the onset of endocarditis, the impact of smoking and alcohol, and the possible inheritance of the heart condition were poorly understood by the patients. Most of female patients knew that the oral contraceptive pill was the most appropriate method of birth control; most of them were aware that pregnancy would cause additional risks to their health. Multiple logistic analysis showed that four correct answers were related to the age of the patient.
  
  
  CONCLUSIONS
  Overall the results indicated that the educational efforts of all the staff (physicians and nurses) have given encouraging results, but there are still significant gaps in knowledge that need more educational work.
authors.affiliation: Pediatric Cardiology Department & GUCH Unit, Istituto Policlinico San Donato, San Donato Milanese, Italy. massichessa@yahoo.it
authors.forename: Massimo
authors.initials: M
authors.lastname: Chessa
authors.forename: Gabriella
authors.initials: G
authors.lastname: De Rosa
authors.forename: Manuela
authors.initials: M
authors.lastname: Pardeo
authors.forename: Gabriela Diana
authors.initials: GD
authors.lastname: Negura
authors.forename: Gianfranco
authors.initials: G
authors.lastname: Butera
authors.forename: Vlasta
authors.initials: V
authors.lastname: Feslova
authors.forename: Luciane
authors.initials: L
authors.lastname: Piazza
authors.forename: Alessandro
authors.initials: A
authors.lastname: Giamberti
authors.forename: Eduardo
authors.initials: E
authors.lastname: Bossone
authors.forename: Mario
authors.initials: M
authors.lastname: Carminati
mesh_terms: D000328:Adult; D005260:Female; D006333:Heart Failure / Q000523:psychology*; D006801:Humans; D007258:Informed Consent; D008297:Male; D010353:Patient Education as Topic; D010817:Physician-Patient Relations; D011379:Prognosis; D011788:Quality of Life; D011795:Surveys and Questionnaires