Health care for young adults undergoing predictive genetic testing for cardiomyopathies

Background: Predictive genetic testing is important for risk stratification in inherited cardiac conditions, yet may cause psychological distress. The aim of this study was to determine the healthcare needs of young adults undergoing predictive testing for inherited cardiomyopathies. Method: In this qualitative study, 11 young adults (aged 16–25 years) were interviewed; data was analysed inductively using thematic analysis. Results: Interviewees had a reasonable understanding of inheritance but there was often confusion between cardiac imaging and genetic testing results. Young adults who described a traumatic experience following a family member's diagnosis showed more anxiety than those who had known about their risk since birth. Participants expressed anxiety regarding their future health, reproductive plans and career choices. Conclusion: Confusion, reliance on parents and limited communication with others may be especially applicable to young adults having predictive testing. Implications: Tailored counselling is needed, with appropriate transitional arrangements to enable young adults to assume responsibility for their health care.