Information for Parents

As you child begins to enter his/her teens, you need to begin to think about their future health care. Many parents are surprised to find out that their child won’t be able to continue in pediatrics and will need to find an adult cardiologist. This can be frightening because your pediatric cardiologist has most likely been part of your child’s life since birth. But the time will come when your young adult will developed "adult" problems and is "too old" to be followed by their pediatrician. The transition to finding medical care that is adult-oriented, but also knowledgeable about your child’s heart condition becomes a challenge for many families.

Because so many children with chronic diseases are surviving into adulthood, the American Heart Association and American Academy of Pediatrics are encourage the development of transitional care programs to support families through this process.

What is transition health care?

Transition health care is the purposeful movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care. One goal of Healthy People 2030 is to provide uninterrupted services to young adults with chronic conditions as they transition from pediatric to adult health care.

Why is there a need for transition health care now? Does it affect that many children?

Today it’s estimated that at least 20 percent of children have a chronic physical, emotional, behavioral, or developmental condition. Congenital heart disease is just one example. Over the past three decades, the life expectancy of children with congenital heart disease has increased dramatically, with over 90 percent of such children surviving into adulthood regardless of the complexity of their heart defect. As a result today there are more adults with CHD than children.

Why can’t they continue to see the pediatric subspecialist?

All adults with special health care needs deserve an adult-focused cardiologist. This is to ensure that just as children receive optimal care by a doctor experienced in the care of children, adults are also entitled to benefit from receiving care from physicians trained and experienced in adult medicine. The most successful transition requires communication and collaboration among pediatric and adult cardiac specialists with their young adult patients, and families.

What can you do to start the transition process for your child?

• Talk to your teen and find out how much he/she knows about their cardiac condition-- fill in gaps as needed and correct any misunderstandings.
• Talk to your teen about the importance of calling the doctor if they experience serious signs or symptoms like dizziness, chest pain or shortness of breath.
• Encourage your teen to take his/her own medication and over time teach them how to reorder their prescriptions.
• Discuss the need for long-term medical care; encourage him/her to talk to their doctor about what they can expect in the future.
• At each doctor’s visit, encourage your teen to talk directly with their doctor. Eventually let him visit with the doctor alone.
• As your teen begins to talk about college or moving away, discuss importance of finding adult heart doctor nearby.
• As your teen approaches 18, begin to discuss paying for health care -- and importance of having health insurance.

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News/Publications

Transitioning from Pediatric to Adult Healthcare

The life expectancy of children with complex illnesses has increased dramatically over the past three decades.  As a result, many adolescents must learn to manage their own chronic diseases or disabilities when they become adults. The key to a smooth transition from childhood to adult care, experts say, is planning ahead. Read full article

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