Transitioning from Pediatric to Adult Health Care

At a glance

  • Ongoing, appropriate medical care can help children and young adults with a heart defect live as healthy a life as possible.
  • It is important to have a plan in place for transitioning from pediatric to adult health care.
listening to heart

Importance of planning

Though treatments have improved, 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. Ongoing, appropriate medical care can help children and adults with a heart defect live as healthy as possible.

The transition from pediatric to adult health care can be tricky for teens and young adults living with a heart defect. They will need to plan for a possible change in insurance and a change from a children's heart specialist to an adult heart specialist. Planning for this transition should start during childhood to help people with heart defects lead healthy, independent lives as adults.

The healthcare transition plan

A healthcare transition plan for someone living with a heart defect should:

  • Include age-appropriate education about their specific heart defect
  • List any medical conditions the person has
  • Foster a sense of independence and control over healthcare decisions

If you are living with a heart defect‎

Work with your healthcare providers to develop a transition plan appropriate for you and your family's needs.

What CDC has learned

Most parents of children with heart conditions are interested in discussing the transition to adult health care with their child's healthcare provider.1Specifically, they want more information on their child's long-term healthcare needs and adult health insurance.

Additionally, many parents of children with heart defects have had conversations with healthcare providers about transition.2However, parents may still have concerns such as

  • Replacing their strong relationships with pediatric providers
  • Locating an adult provider
  • Accessing adult health insurance coverage for their child
provider talking with a young patient.
Work with your healthcare provider to develop a healthcare transition plan.

When to transition from pediatric to adult care

Ideally, people should transition to adult medical care between the ages of 18 and 21 years. Medical experts recommend that clinicians begin transition planning when patients with heart defects reach 12 years of age. However, the timing of the transition to adult care will differ for everyone. Work with your healthcare team to develop a transition plan that is appropriate for your needs.

To learn more about developing a transition plan‎

Download the Got Transition® step-by-step healthcare transition timeline for youth/young adults and parents/caregivers.
https://www.gottransition.org/resources-and-research/youth-and-families.cfm

Find an adult heart specialist

Adult heart specialists can

  • Diagnose any new or unresolved issues in adulthood
  • Help patients monitor ongoing risks and health problems
  • Coordinate care across medical specialties

It is 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.

Adult CHD Clinic Directory‎

The Adult Congenital Heart Association offers a clinic directory to help connect people living with heart defects to specialty care across the United States.
https://www.achaheart.org/your-heart/resources/clinic-directory/

Know your condition

It's important for people to understand as much as they can about their heart defect and related health conditions.

People with heart defects should know the following about their condition:

  • Name of your heart condition and how to describe it
  • Your medical history, including any heart surgeries and treatments
  • Your medications and their dosages, including what each medication is for

People with heart defects can ask an adult heart specialist these questions:

  • How to identify signs of new heart problems
  • Your health risks as an adult
  • What kind of exercise is best for you, including any activities you should not do
  • What kind of diet you should follow
  • What form of the flu vaccine you can receive, and other vaccines

Resources

There are many national patient organizations with resources for people living with heart defects and their families.

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Content Source:
National Center on Birth Defects and Developmental Disabilities (NCBDDD)
  1. Downing KF, Oster ME, Farr SL. Preparing adolescents with heart problems for transition to adult care, 2009–2010 National Survey of Children with Special Health Care Needs. Congenital Heart Disease; 2017 Jul;12(4):497-506.
  2. Gaydos LM, Sommerhalter K, Raskind-Hood C, Fapo O, Lui G, et al. Health care transition perceptions among parents of adolescents with congenital heart defects in Georgia and New York. Pediatric Cardiology; 2020