Adolescent and parent perspectives prior to involvement in a Fontan transition program

Area of Science:

• Pediatric Cardiology
• Transition Medicine
• Congenital Heart Disease (CHD)

Background:

• Successful transition to adult healthcare is critical for patients with congenital heart disease (CHD) post-palliative surgery.
• This study focuses on adolescents with single ventricle physiology undergoing the Fontan procedure, a complex CHD spectrum.

Purpose of the Study:

• To assess the readiness of adolescents with Fontan circulation and their parents for transitioning to adult care.
• To evaluate readiness prior to implementing a dedicated transition program.

Main Methods:

• A questionnaire-based study involving 17 adolescents (aged 15-18) and 15 parents.
• Data collected at the commencement of the first transition clinic visit.

Main Results:

• Adolescents demonstrated limited knowledge of their Fontan circulation and medication purposes (41% poor understanding).
• Over half lacked knowledge on seeking medical help; comfort discussing sensitive issues, especially emotional wellbeing, was low.
• Parents reported significant anxiety regarding the transition to adult care services.

Conclusions:

• Pre-program findings reveal deficient adolescent health literacy and insufficient focus on emotional wellbeing in current health services.
• There is a clear need for structured transition programs emphasizing early preparation, parental engagement, and a holistic, youth-centered approach.
• Prioritizing emotional wellbeing and system integration is crucial for successful healthcare transitions in this vulnerable population.