Transitioning from Pediatric to Adult Medical Care for People with a Heart Defect
Individuals and families can work with their healthcare providers to develop a transition plan that is appropriate for their family’s needs
Ongoing, appropriate medical care can help children and adults with a heart defect live as healthy a life as possible. The transition to adult health care can be tricky for teens and young adults living with a heart defect. They may need to navigate changes in insurance and will need to transition from a children’s heart specialist (whom they may have known all their lives) to an adult heart specialist. It is especially important for people living with a heart defect and their families to begin planning for this transition during childhood to lead healthy, independent lives as adults.
A transition plan should include age-appropriate education about the person’s specific heart defect and medical conditions, and it should foster independence and a greater sense of control over healthcare decisions. Below are some questions and answers about the transition from pediatric to adult medical care:
What have scientists learned about the transition from pediatric to adult medical care for people living with heart defects?
- Survey data suggest that healthcare providers are talking about transition with most parents of children with heart defects. However, parents may not be receiving information about their areas of concern, such as replacing the strong relationship with pediatric providers, locating an adult provider, and accessing adult health insurance coverage for their child.
- Among parents of children with special healthcare needs with heart problems who did not have discussions about transition with their child’s healthcare providers, 2 in 3 parents desired a conversation. Specifically, they sought information on their child’s long-term healthcare needs and adult health insurance.
- Researchers from CDC and partner organizations found that children and teens with heart defects commonly had other birth defects as well as problems with breathing, mental health issues, or other heart problems. Teens with more severe types of heart defects were most likely to be admitted to the hospital for care. Continued medical care across the lifespan may help prevent more advanced health problems from developing. Finding and treating small problems early may prevent big problems later in life.
When should a person transition from pediatric to adult medical care?
Ideally, people should transition to adult medical care between the ages of 18 and 21 years. The American Heart Association and the American College of Cardiology recommend that clinicians begin discussing the transition process with patients and families when their patients with heart defects reach the age of 12 years. However, the timing of the transition to adult care will differ for everyone. Individuals and families can work with their healthcare providers to develop a transition plan that is appropriate for their family’s needs. For more information, download the Got Transition® step-by-step healthcare transition timeline for youth/young adults and parents/caregivers.
If a person’s heart defect was repaired, do they still need to see an adult heart specialist?
At this time, even with improved treatments, many people born with heart defects are not cured, even if their heart defect has been repaired. As they grow older, they may need additional medications, surgeries, or other procedures after initial childhood surgeries. Adult heart specialists can diagnose any new or unresolved issues in adulthood, help patients monitor ongoing risks and health problems, and coordinate care across medical specialties.
How can I find an adult heart specialist for myself or my child?
It’s important to choose the right doctor and adult congenital cardiology program to manage a person’s heart defect and personal health. Depending on where you live, you may need to travel for the best care. The Adult Congenital Heart Association offers a clinic directory to help connect people living with heart defects to specialty care across the United States.
What questions should people ask their adult heart specialist?
It’s important for people to understand as much as they can about their heart defect and related health conditions. Consider asking an adult heart specialist these questions:
- What is the name of my heart condition and how do you describe it?
- What is my medical history, including any heart surgeries and treatments?
- What are my medications and their dosages? What is each medication for, and what does it do for me?
- How will I be able to identify any signs of new heart problems?
- What are my health risks as an adult?
- What kind of exercise program is best for me? Are there any activities I should not do?
- What kind of diet should I follow?
- Can I get the flu shot and other vaccines, including the COVID-19 vaccine?
Where can I go for more information?
There are many national patient organizations with resources for people living with heart defects and their families.
- Adult Congenital Heart Association: Planning Ahead for Lifelong Heart Health
- American Academy of Pediatrics: Health Supervision for Adolescents and Young Adults (Heart Defects)
- Conquering CHD: Transition Checklist (Heart Defects)
- Emory Healthcare: Care Transition (Heart Defects)
- Mended Little Hearts: The Mended Little HeartGuide