title: Adult CHD: the ongoing need for physician counselling about heredity and contraceptive options.
abstract: Purpose Current guidelines recommend that patients with CHD receive age-appropriate counselling on reproduction, pregnancy, and risk of heredity. Our aim was to examine patient knowledge of reproductive health and explore the association between patient knowledge of CHD transmission risk and earlier physician counselling in adults with CHD.
  
  
  METHODS
  We performed a cross-sectional survey of patients with CHD aged 18 years and older in a paediatric hospital.
  
  
  RESULTS
  Of the 100 patients who completed the questionnaire, most did not report counselling on heredity (66%) or contraception (71%). Of the 54 women, 25 (46%) identified their contraceptive options correctly; 42 (78%) women were classified as being at significantly increased risk for an adverse outcome during pregnancy, and of these 20 (48%) identified this risk correctly. Of all patients surveyed, 72% did not know that having CHD placed them at increased risk for having a child with CHD. On multivariate analysis, factors associated with correct knowledge about risk of recurrence were correct identification of CHD diagnosis (p=0.04) and patient-reported counselling (p=0.001).
  
  
  CONCLUSIONS
  Knowledge about heredity, pregnancy risk, and contraceptive options is inadequate among adults with CHD followed-up in a paediatric subspecialty clinic. The majority of patients did not report a history of counselling about reproductive health. There is a strong correlation between history of counselling by the patient's cardiologist and correct knowledge about recurrence risk, suggesting that effective reproductive counselling can positively impact this knowledge gap.
authors.affiliation: 1Division of Pediatric Cardiology,The Children's Hospital of Philadelphia,Philadelphia,Pennsylvania,United States of America.
authors.forename: Camila
authors.initials: C
authors.lastname: Londono-Obregon
authors.affiliation: 1Division of Pediatric Cardiology,The Children's Hospital of Philadelphia,Philadelphia,Pennsylvania,United States of America.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Goldmuntz
authors.affiliation: 1Division of Pediatric Cardiology,The Children's Hospital of Philadelphia,Philadelphia,Pennsylvania,United States of America.
authors.forename: Brooke T
authors.initials: BT
authors.lastname: Davey
authors.affiliation: 3Biostatistics and Data Management Core,The Children's Hospital of Philadelphia Research Institute,Philadelphia,Pennsylvania,United States of America.
authors.forename: Xuemei
authors.initials: X
authors.lastname: Zhang
authors.affiliation: 2Department of Pediatrics,Perelman School of Medicine,University of Pennsylvania,Philadelphia,Pennsylvania,United States of America.
authors.forename: Gail B
authors.initials: GB
authors.lastname: Slap
authors.affiliation: 1Division of Pediatric Cardiology,The Children's Hospital of Philadelphia,Philadelphia,Pennsylvania,United States of America.
authors.forename: Yuli Y
authors.initials: YY
authors.lastname: Kim
mesh_terms: D000293:Adolescent; D000328:Adult; D003267:Contraception / Q000379:methods*; D003376:Counseling; D003430:Cross-Sectional Studies; D005260:Female; D005817:Genetic Counseling; D007722:Health Knowledge, Attitudes, Practice; D006330:Heart Defects, Congenital; D006801:Humans; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D010414:Pennsylvania; D060728:Reproductive Health; D012307:Risk Factors; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: counselling; heredity; reproductive health