Transition Guide for Teens with Sickle Cell Disease: 10 Steps to Help You Move from Pediatric to Adult Care

Moving from pediatric (children’s) care to adult care for sickle cell disease can be challenging. As you transition to adulthood, you become responsible for your own health care needs and medical care.

You will need to prepare to transition from a pediatric hematologist (sickle cell doctor) to an adult hematologist.

This information will help you make this change, which is called a transition to adult care. Talk to your care team about your questions and concerns — they are here to help.

What is a transition to adult care?

This means changing from your pediatric hematologist to a hematologist who treats adults. This is important because:

• Most children’s hospitals do not treat anyone older than 18.
• Your body is changing, and medical care for an adult is different from what you needed as a child.

Also, at 18 years old, you are a legal adult in the United States, so you will have to:

• Give your permission for your parents or other family members to see your medical records or to talk to your doctor about your treatment
• Sign all of your medical documents because your parents or guardians cannot sign for you

You will be a legal adult at 18, but you still have people to support you and help you make decisions about your medical care. Be sure to rely on your:

• Doctor and health care team
• Social workers and care coordinators
• Parents, caregivers, family members, and friends

To be successful in the transition, it is important that you have the support, information, and resources needed to make decisions about your medical care.

You should know:

• How sickle cell disease affects your body
• How to get your medical records
• How to ask questions about your treatment
• How to use the health care system as an adult
• How to get support when you need it

1. Learn how sickle cell disease affects your body

Your care team can help you learn how sickle cell disease affects your body. You will need to know:

• Your medical history
• What type of sickle cell disease you have
• Medical problems and complications you have had
• What medicines you take and why
• Your average or usual hemoglobin level

2. Get access to your medical records

Be sure you know how to access your medical record. You can access it through your patient portal on your phone or computer. You can also ask for a paper copy. You need your medical record so that you can:

• Know and understand your health information
• Make sure your medical record is complete
• Give your medical record to your adult hematologist and other health care providers
• Make informed decisions about your care

Your medical record should have the following information:

• Name
• Date of birth
• Type of sickle cell disease
• Recent medical problems
• Ongoing medical problems
• Past medical history
• Past surgeries
• Transfusion history
• Recent labs and test results
• Allergies
• Current medicines
• Immunizations
• Family and social history
• Physical exams

3. Keep a medical identification (ID) card in your wallet or phone

A medical ID card is a card that you carry in your wallet. You can find different types online to buy or download and print for free. You can also put important health information in an app on your phone. Your medical ID card should have the following details:

• Name
• Date of birth
• Type of sickle cell disease
• Other medical conditions
• Allergies
• Blood type
• Average hemoglobin
• Emergency contact information
• Name of hematologist
• Other (for example, medications, current treatment of major complications, health insurance)
• Information current as of [date]

4. Get a copy of your health insurance card

Your health insurance carrier will issue you a copy of your insurance card. Contact your insurance carrier if you do not have one. You may have separate cards for medical care, medicines (pharmacy), or dental and vision care. Keep your insurance card with you at all times.

Be sure you know the answers to these important questions:

• Do you have a co-pay for office visits and visits to the emergency room?
• Which doctors and hospitals take part in your insurance plan?
• What happens if you are traveling out of town?
• How does your insurance handle payment?
• Do you need pre-approval for surgery or specialist care?

5. Know your health insurance coverage

Health insurance coverage usually changes when you turn age 18:

• If you are covered by a state health care plan, you will have to reapply shortly after your 18th birthday.
• If you are covered by your parents’ health insurance, coverage usually stops the day you turn 26 years old.
• If you attend college, you may be able to get discount health insurance through your school.
• If you start working at a job, you may be covered under your employer’s medical plan.

Talk to your social worker if you have questions about insurance coverage.

6. Get a durable power of attorney for health care

A durable power of attorney for health care is a document that allows someone to make health care decisions for you if you cannot make them for yourself. This is someone you choose. It can be a spouse, parent, or friend who is 18 years or older.

Before choosing someone as your durable power of attorney for health care:

• Talk about your wishes for your health care with that person
• Make sure that the person you choose is comfortable making medical decisions for you if you cannot make them for yourself

Give a copy of your durable power of attorney for health care to your doctor and the hospital whenever you are admitted.

7. Get recommended immunizations

In addition to your required childhood immunizations, you should have the following vaccinations if recommended by your care team:

• Pneumococcal vaccine (Prevnar 20)
• Meningococcal vaccine (Menveo and Bexsero)
• Influenza vaccine

You can get vaccines at your hematology clinic, primary care doctor’s office, urgent care clinic, or your local pharmacy or health department.

8. Find a hematologist who treats adults with sickle cell disease

To transition your care to a new hematologist:

• Work with your care coordinator. They can give you a list of hematologists in your area who treat adults. They can also help you schedule your first appointment.
• With your consent, your medical records will be sent to your new hematologist’s office before your first visit.
• Make a list of questions to ask during your first visit.

9. Learn how to take an active role in your medical care

As an adult, you will need to ask questions and speak up for yourself about your health care. Keep in mind:

• Schedule your own appointments. Adult hematologists will not schedule or reschedule appointments for you. That is your responsibility.
• Provide updated information to your providers. You are responsible for making sure your health care providers have your updated medical records and insurance information.
• Keep all appointments. See your new hematologist on a regular basis.
• Get all care that your providers recommend. Do not neglect your health. Get the care you need when you need it. If you wait until you have a problem, it might be too late. Think ahead and try to prevent problems before they happen.
• Communicate with your providers. Write down what you need to tell your doctors before your appointment.
• Help coordinate your care. Ask your hematologist to:
  • Send a copy of your clinic notes and test results to your primary care doctor after each visit
  • Give you a printed or electronic copy of your clinic notes and test results after each visit for your personal medical records

10. Choose a primary care provider

You also need a primary care provider to take care of any other health issues that are not related to sickle cell disease. It is like having a pediatrician and a pediatric hematologist. Your primary care provider will:

• Help with health needs that aren’t just about sickle cell disease, like sports physicals, colds, asthma, or stomach issues
• Do yearly physical exams and check-ups
• Help coordinate care between all of your specialists. Your insurance policy may require a primary care provider to give you referrals to other health care specialists.

Questions to ask your care team

• Can you explain the type of sickle cell disease I have and how it affects my body?
• What medical problems or complications should I watch for?
• Can you review my medical history with me so I understand the important information?
• How do I get a full copy of my medical record?
• What information will my new adult hematologist need before my first visit?
• When should I start scheduling my own appointments, and how do I do that?
• Am I up to date on vaccines?
• What should my primary care doctor handle, and what should my hematologist handle?

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