Transitioning to Adult Care With Congenital Adrenal Hyperplasia

Congenital adrenal hyperplasia (CAH) is a lifelong condition that affects the adrenal glands, causing hormonal imbalances. For those with CAH, moving from pediatric to adult medical care is critical. But this transition can be challenging. It involves new doctors, different treatment approaches, and more patient responsibility.^1-3

Ideally, a young person’s pediatric and adult teams collaborate during this process. However, there is limited research, and the existing data show that transition support for those with CAH is greatly lacking.^1,2

When to start transitioning from pediatric to adult care

One study recommends that adolescents with CAH start talking to their health team about transitioning, with a full transition around age 16. Your exact timing can vary based on your specific needs.^1,3

A slow and steady approach often works best, allowing time to adjust. Do not rush this process. Ask your pediatrician or health team to help create a transition plan that meets your needs. This process should be gradual to give you and your caregiver(s) time to learn and adjust to a new normal. Ideally, you should feel comfortable and confident in managing your condition by the time you move to adult care.^1-3

Challenges of transitioning from pediatric to adult care

Transitioning from pediatric to adult care can be overwhelming for adolescents with CAH. Pediatric care can be more structured, with parents or caregivers handling much of the responsibility. Once you move to adult care, you may need to take more control of your own health.^1-3

One challenge is finding an adult endocrinologist who understands CAH. Because CAH is a rare condition, some doctors may not have as much experience managing and treating it. You may also need to coordinate care with other health specialists, such as a urologist, gynecologist, fertility expert, and geneticist. Managing these relationships can be challenging and time-consuming.^1,2

Another challenge for adolescents with CAH is sticking to their medicine schedule. Not doing so can lead to adrenal crisis and other health complications. Transitioning to adult care can also include the need to remember to take your medicines on time, schedule your own doctor’s appointments, and manage other aspects of your care. For some, this responsibility can be a lot to handle.^1-3

In addition, the hormonal changes that come with puberty further complicate CAH treatment and symptoms. This makes this transition process even more critical since those with CAH will often need specialized medical care.^1-3

What can help make the transition successful?

Transitioning to adult care is more than a transfer of records from 1 doctor’s office to another. Coordination between a young person’s pediatric and adult doctors is key to a smooth transition. And it starts with good communication. This transition should be a learning process that prepares young people with CAH to be independent.^2-4

If you are a young adult with CAH, it will help to:^1-3

• Understand CAH and how it affects your body
• Know your treatment and surgical history
• Have knowledge of sexual function and fertility expectations
• Learn to talk to your health team about your condition, medical history, symptoms, and treatments
• Be comfortable asking questions
• Be able to refill prescriptions as well as make and keep doctor’s appointments
• Make informed decisions about long-term care
• Know how to manage treatment during an adrenal crisis
• Learn to advocate for yourself

Tools to make the transition easier

Several tools can help make the transition easier for people with CAH. Work closely with your pediatric doctor and your new adult doctor during this time. Ask questions and make sure you understand your treatment plan, medicines, and the changes that may come as you age.^1-3

A useful tool is a medical summary. This should include details about your diagnosis, your treatment history, medicines you are taking, and any other important health information. Having this ready can make it easier when you see a new doctor.⁵

Here are other tips to keep in mind:^3,4

• Transition is a multi-year process, not a single event.
• The process should begin as early as possible.
• Teens, caregivers, and doctors should discuss and plan the transition as a team.
• It is best to avoid transitioning during a medical crisis.
• If possible, involve your family or support network. You do not have to manage everything on your own.

Resources that can help

Here are some resources that can help with the transition to adult care:

• Got Transition
• Ready Steady Go

Disease-specific foundations and children’s hospitals also may offer support for teens with CAH transitioning to adult care. For example, CAH foundations like the Cares Foundation may offer support events and resources. Knowing someone else going through similar things can be very valuable in helping young people feel less alone.²