Transferring to Adult Heart Defect Healthcare

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.

• 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)

• 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

• 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

• 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.

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.