Adult Transition Evaluations for Teens with a CHD

Many teens with congenital heart defects (CHDs) should be evaluated shortly before becoming legal adults at age 18. For many teens, this age corresponds with big changes in their lives, such as leaving high school, starting a job, moving to post-secondary schooling, and/or moving out of their family's house. For all teens, this age brings with it new adult rights, and questions about their level of independence.

Teens with heart defects should generally be evaluated at around age 18 if they are considered to be at high risk of developmental delay or disability. This usually means they:

• had a heart surgery as a baby, or

• had chronic low oxygen as a baby

• had a heart transplant

• had ECMO or a VAD

• had a cardiac arrest

• had a hospitalization or procedure as a child for a condition secondary to their heart defect

• had a stroke or seizure

• have a brain injury

Parents can ask their cardiac neurodevelopmental team or their cardiologist if they are unsure of their teen's risk level.

Even when high-risk teens with heart defects are developing well, many experts still recommend that they have regular evaluations: 

• to monitor their development 

• to detect early signs of problems that may appear 

• to plan services 

An adult transition evaluation can help young adults and their families make informed decisions about next steps in their schooling, work, and living situation. It can help families determine what level of independence a young adult is ready for, and what supports the young adult may need to reach future goals.

When they turn 18, young adults are given new rights and responsibilities. Unless they have guardianship, parents will no longer have the right to manage the young adult's care, attend their appointments, or view their medical information without the young adult's explicit permission.

After a young adult turns 18, they usually are responsible for scheduling their own evaluation, managing communication with the evaluator, deciding if they want parents to join them, and determining if and how to share any resulting reports. Families should plan ahead if this transition to adult responsibility seems worrisome for a particular young adult.

Many families live near a hospital with a cardiac neurodevelopmental program.  For these families, a local cardiac neurodevelopmental program is probably the best place for an evaluation. 

In places without a cardiac neurodevelopmental program, teens with heart defects can have a neurodevelopmental evaluation with a psychologist.  

Families should ask the psychologist if they are familiar with the development of adolescents with heart defects.  If possible, families should try to work with a psychologist who understands the common challenges faced by adolescents with heart defects. 

If they are unsure where to go, families should ask their doctor where to get a neurodevelopmental evaluation for their teenager.  

Evaluations are slightly different from hospital to hospital, and provider to provider. However, an evaluation for an adolescent usually has these steps: 

1. Referral: The family refers the young adult for an evaluation, or a doctor refers the young adult. 

2. Scheduling: The parent or teen talks with the scheduler, and sets up an appointment. There might be a long waitlist, so families should consider setting up their evaluation about 6-12 months ahead of time. 

3. Questionnaires: Before the first appointment, the evaluator may send questionnaires to be completed by the parents, teachers, and/or teenager.  Families should do their best to finish the questionnaires before the appointment. If parents have questions, they can call the scheduler and ask for help. 

4. Interview: The evaluator usually starts with an interview with young adult and their family. The interview might happen in the same appointment as the testing, or a different appointment. Sometimes the interview can be virtual, but is usually in person. 

5. Testing: The young adult meets with the evaluator, answers questions, and does activities..   

    

6. Feedback: The family meets with the provider to discuss what they learned from the testing. This appointment can happen the same day as testing, or a different day. It may happen virtually, or in person. 

    

7. Report: The provider sends the family a written report. The report includes everything they learned from the testing, plus recommendations. Families can choose to share this report with their doctor, other therapists, and local school district.   

Through the testing process, parents and teenagers should always ask if they have questions, ideas, or concerns.  

Parents know their child best. They and the child are the most important part of any evaluation team. Parents and teenagers should share their own observations about the teen's development and functioning, and ideas about what might help.

Evaluators use many tools in order to learn about the development of an adolescent. They select tools based in each person's strengths, needs, and goals. 

When assessing 18-year-olds with heart defects, evaluators often use: 

• Tests of how young adults think, learn, use language, interact, remember, focus, and solve problems 

• Questionnaires for parents and teens 

• Structured conversations with the parents and teen

Teens and their parents should always feel comfortable asking questions before, during and after an evaluation.  

When choosing an evaluator, families may want to ask questions such as: 

• What is your training in evaluation and assessment?  

• What is your experience testing teens this age? 

• What is your experience testing adolescents with my child’s conditions and diagnoses? 

• What tools will you use to answer the questions I have? 

• How will you adapt testing to meet the needs of my child? 

• Will I receive a report after my evaluation? What will the report cover?  

• After testing, how long will it take for me to receive the report? 

• After testing, are you available to attend meetings with my child’s school district? 

There is no right answer to these questions, but they may help families select a provider that is right for them. 

After an evaluation, parents and teens may want to ask question such as: 

• How is my teen developing as compared with other teens their age? compared to other teens with their medical condition? 

• What are my teen’s strengths? 

• In which areas (if any) does my teen have developmental delays or disabilities? 

• Do you expect my teen to grow out of any problems that you have noticed? 

• What challenges do you think my teen might face in the next year? 5 years? 10 years?

• What school services, accommodations, and modifications does my child need?

• What work accommodations or modifications might my child need?

• Do you think my teen is able to live independently now? In the future?

• Should my teen be receiving 18-22 Special Education programming?

• What sort of educational and job opportunities would be appropriate for my child?

• What can I do at home to support my child’s development? 

• What services does my child need outside of school?

• When should my child next be evaluated? 

• What resources can help my child meet their goals?

• What signs should I look for that my child is making expected progress? 

• What signs should I look for that my child may need to come back to see you sooner than expected? 

These questions can help families to make sense of the report, and to move forward with recommendations. Parents and teens should always keep asking questions until they are sure they understand.  

By age 18, most young people with congenital heart defects have stable profiles of strengths and weaknesses, and many have a solid and realistic plan for moving into their adult lives. Some young adults have more questions and uncertainty about what they can do, and what they want to do.

As young adults move past age 18, some may continue to have questions about their skills and functioning. They can seek adult evaluations to gain more clarity when they feed like they need it.

Families should ask their evaluator how to continue to monitor their teenager's development, and whether to schedule a further evaluation.

This content was reviewed by a psychologist 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/or the Boston Adult Congenital Heart (BACH) program. Families from other regions can use the link below to find their local care team.