Transferring to Adult Heart Defect Healthcare
Ages 13 - 24 Years
At some point during early adulthood, most people with heart defects transfer their care to adult healthcare providers. This transfer can often be challenging for both young adults and their parents. When families anticipate and preview the change, they can work with their providers to make sure it goes smoothly, and everyone feels comfortable. When handled well, this change can be an exciting milestone.
In this section
Transfer of Care Overview
Children and adults have different needs. They can be prone to different illnesses, and may require different treatments. They face challenges that are specific to their time of life. Because of these differences, many medical and behavioral health providers specialize in either children or adults, but not both. Young adults may get better care if they are treated by providers who have expertise in their age range.
Young adults with heart defects should usually transfer to a provider who specializes in adult congenital heart disease (ACHD). Young adults with heart defects often have other providers in addition to their cardiologist, such as a psychologist, pulmonologist, hepatologist, or psychiatrist. They will need to work with each clinician to arrange transfer of that type of care.
Transfer of care varies from one person to another, depending on their unique needs. Many young adults transfer to adult doctors some time between the ages of 18 and 24. Occasionally, young adults with very complex heart defects remain with their pediatric cardiologists through adulthood, if there are no specialists in adult congenital heart disease (ACHD) in their area.
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Transfer of Care Timelines
When a young person is preparing to transfer care, they can make the process easier by spreading it out over years. Here is one possible timeline, which should be adjusted according to individual abilities and needs.
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Ages 12 - 13
Ask providers at what age the patient will need to transfer to an adult provider (if ever)
The young person can start learning about their own medical and developmental condition(s)
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Ages 14 - 15
The young person can learn more about their own health, and what to do in an emergency
The young person can practice scheduling a doctor's appointment and calling in a prescription refill
The young person can spend part of a doctor's visit without their parent in the room
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Ages 16 - 17
The young person can regularly call in prescriptions, schedule doctor's appointments, ask the doctor questions they have, and see the doctor on their own
The doctor can educate the teen and family about privacy rights when they turn 18
The doctor and family should work together to make a medical summary, medical passport, and/or virtual medical journal
The young person and family should determine whether the young person will need help making medical decisions as an adult, and ask a hospital social worker for help if so
The young person, family, and medical team should decide when they want to transfer care
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18 - 24
The young person can decide whether and how they want their parents to have access to their medical information, and they can grant access accordingly.
If the young person has a guardian, the guardian can talk with the young person and their providers about ways to promote dignity, agency, and independence in medical care and decision-making.
The young person can ask their doctor for recommendations of adult providers, and ask the pediatric provider to set up the first appointment with the adult provider.
The young person can ask the doctor to talk with the new provider, and share all medical information.
The young person can ask to meet with the child and adult providers together, if possible.
The young person can ask their pediatric provider if they can check in and ask questions about their transfer of care if they have any.
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Help and Support
Multiple excellent resources are available to guide families through the process of transfer of care. See below for resources that may help.
These links are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites.
This content was reviewed by staff at the Cardiac Neurodevelopmental Program at Boston Children's Hospital.
Developmental care is best when it is local. Families local to Boston can receive care from the Cardiac Neurodevelopmental Program (CNP) and the Boston Adult Congenital Heart (BACH) program. Families from other regions can use the link below to find their local care team.
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