As adolescent patients with congenital heart defects (CHDs) enter adulthood, it is important for them to maintain regular cardiac care, including routine testing, check-ups and medications.
Teens may become overwhelmed with the responsibility of taking over their own health care decisions and management; however, the Children’s team offers education and resources to help seamlessly transition patients into the Adult Congenital Heart Disease (ACHD) program. The program, in partnership with Nebraska Medicine, allows patients living with congenital heart disease to be seen through adulthood by providers with specialized training.
To prepare adolescents for the process, here are five tips to aid in the transition from pediatric to adult cardiac care.
1. Avoid any time gap between providers.
Be sure to have an appointment made with an adult cardiac care provider before appointments with the pediatric provider end. Eliminating the time gap between providers will ensure that needed heart health monitoring occurs.
2. Help adolescents understand their heart condition.
To prepare for the transition to adult care, begin by encouraging your child to ask questions so they fully understand their heart condition. Each condition is different, and their cardiologist may provide lifestyle recommendations to improve outcomes and quality of life. Understanding the congenital heart defect will help adolescents make healthy decisions in their adulthood.
Some questions are:
- What is the exact diagnosis?
- At what age was the diagnosis?
- What major procedures have occurred and what were the outcomes?
- Have any other conditions or concerns developed as a result of the heart condition?
3. Help adolescents take the lead in their heart health.
Until now, parents or caregivers have been responsible for managing medications, making appointments and asking questions. The transition to an adult cardiac care provider is an opportunity to help the teen take the lead in their own heart health.
This is a time to show teens how to make appointments and understand necessary medications. Provide guidance, knowledge and support while creating a sense of empowerment and comfort. It is important for the child to feel confident in navigating their condition and health.
4. Consider more than just physical needs.
Heart conditions can impact physical and emotional well-being. Distress, anxiety or depression can occur because of frequent doctor appointments, lifestyle limitations and more.
Before transitioning to adult cardiac care, ask the pediatric cardiologist to talk to the family about the heart condition and the impact it could have on mental health as they enter adulthood. Relay any concerns to the adult cardiologist so they can offer the full spectrum of care and resources.
5. Communicate concerns.
Before, during and after transitioning to an adult cardiac care provider, be sure to voice any concerns. Both the pediatric and adult provider can offer support and help navigate heart health care.
Talk to one of our current heart care specialists about making the transition to adult cardiac care and to learn more about Children’s Adult Congenital Heart Disease (ACHD) program.