Genetic Health Education in Adolescents with Congenital Heart Disease: A Patient, Parent, and Clinician Perspective

Improvements in outcomes for congenital heart disease (CHD) have resulted in a growing adolescent/adult CHD population. Subsequently, education on CHD causes and inheritance has been identified as important. This study aimed to determine population-specific understanding and preferences of CHD causes and inheritance education. CHD adolescents aged 13–18 years, their parent, and clinicians involved in the care of patients with CHD completed a purpose-designed, online survey outlining their current understanding of CHD genetics and inheritance and their preferences for education content and delivery. Approximately 50% of participants were unsure if CHD was caused by genetic factors, and 25% believed CHD was not genetic. Many participants (63% (19/30) adolescents, 81% (26/32) parents) wanted to know more about CHD causes, with most considering this important. Over 60% of participants indicated that CHD causes had not been discussed with them, despite 74% of clinicians (17/23) indicating they discuss this. Information on genetic causes of CHD and recurrence risks, delivered in-person with parents present, was the preferred option for the content and delivery of this information. Most clinicians indicated genetics education should be introduced between 12 and 14 years, whereas adolescents and parents preferred this to occur between 14 and 16 years. Participants want to know more about CHD causes and inheritance, in an outpatient setting with parents in attendance. The findings of this study support the development of a specialized genetics education program about CHD causes and inheritance for adolescents with CHD. Further, it provides important insight into the content, timing, and delivery of this information.