Traversing the liminal: what can Fontan adults’ transition experiences and perspectives teach us about optimizing healthcare?

BACKGROUND: Successfully transitioning to adult care is important for congenital heart disease (CHD) patients, particularly those at the worst end of the spectrum with a Fontan circulation, as their ongoing health engagement affects their health outcomes. Yet, there is a lack of literature exploring patient perspectives about their transition experiences, and what helps or hinders successful transition to adult care. METHODS: Young adults with a Fontan circulation (n = 18) from the Australian and New Zealand Fontan Registry participated in in-depth phone interviews. Thematic analyses were used to analyze the qualitative interview data. RESULTS: We identified six key themes which stood out from patient experiences, including differences between pediatric and adult congenital cardiac care, the need for preparation through formal transition programs, and the important role of support systems. CONCLUSION: To become active managers of their healthcare and remain engaged with the healthcare system, young people would benefit from coordinated efforts between pediatric and adult care to formally prepare them for transition to adult care. This should include involvement from their support network and ongoing education about their health condition. The study highlights the importance of studying patient perspectives through qualitative research to better inform health service provision in the CHD space.