Transitioning Your Medical Care: Sickle Cell Disease

If you have sickle cell disease, a pediatric (childhood) hematologist is probably directing your medical care. That doctor and the hematology team have been there to support you and your family. They’ve been there if you had a fever and needed to stay in the hospital or had pain that was too severe to be cared for at home.

Sickle cell disease will be with you throughout your life, in some way or another. The mid-teens is a good time to start looking into “transitioning” from your pediatric specialist to doctors who treat adults.

What Does it Mean to Transition Health Care?

When doctors talk about “transition of care,” they mean safely shifting a teen’s health care from a pediatric to an adult medical practice. But who takes care of you is just one part of this. Transitioning also means learning how to take charge of your own health and manage every aspect of your care, from handling insurance forms to understanding and making decisions about treatments.

Your parents have probably played a big part in your medical care, and that’s great. But after you turn 18, they may not be able to see your medical records or talk about your health with your doctor — even if you want them to.

Your medical team can guide you in the transitioning process, but here are some helpful information.

How Can I Prepare to Transition to Adult Care?

Adult care centers are very different from pediatric offices. The biggest change is often the amount of input and responsibility you’ll have. As an adult, you’re expected to take charge and have more responsibility.

It helps to get ready by being more involved in your health care right now now. Here’s where to start:

• Keep track of your appointments.
• When you arrive at the doctor’s office, check in at the window yourself (instead of relying on a parent or caregiver to do it).
• Keep a list of your current medicines and update it when there are changes.
• Refill your own prescriptions.
• Know your medical information, like any food and drug allergies you may have.

When Should Teens With Sickle Cell Disease Transition to Adult Care?

Most people have to go to a medical practice for adults somewhere between turning 18 and 21. Often, your children’s hospital or doctor’s office will have a policy on the age at which they can no longer see patients. The best time to start seeing adult doctors is well before you can no longer see your current doctors.

Ask your doctor to recommend an adult

hematologist
(and any other doctors you need to see) and make appointments with these new doctors at least a year before the date your current doctor will have to stop seeing you. That way, if you have questions or if something doesn’t feel quite right, there is time to go back to your pediatric doctor for help making your transition.

What to Expect From Your New Hematologist

Adult hematologists expect their patients to know more about sickle cell disease than you’re probably used to. Obviously they won’t require you to know all the medical information. But they will assume that you know what to do when it comes to living with sickle cell disease.

For instance, your adult hematologist will expect you to know:

• what to do when you’re running a temperature
• what medicines to try for mild and moderate pain at home
• how to stay well hydrated
• when to go to the office, a sickle cell treatment center, or the ER

As you meet with your new adult hematologist, you will need to discuss your bloodwork schedule and other routine testing. Most of the time, adult patients with sickle cell disease will:

• see the hematologist every 6–12 months
• see an eye doctor every year
• need pulmonary function tests (PFT) once as a teenager and once as a young adult (if you have asthma, you might need PFTs more often)
• get screening labs and urine tests every year
• possibly need imaging studies done like X-rays, MRIs, or ultrasounds

What About Other Doctors?

If you’re living with sickle cell, you’ve probably seen a specialist at some point — like an

ophthalmologist
or pulmonologist. If he or she is a pediatric doctor, you’ll need to transition to an adult specialist. Your current specialist and your hematology teams (both pediatric and adult) can recommend new specialists and help you make the switch.

Looking Ahead

No matter how well a person prepares, there will always be a few unexpected questions and bumps in the road. That’s OK — moving to adult care is a journey, not a single leap. The important thing is to make sure you always have a health care team in place. So start thinking about this change when you’re in your mid-teens.