Epilepsy: Transition of Care from Pediatric to Adult Healthcare

Growing up, your parent(s) or legal guardian likely helped you with your health care – they added you on their insurance, called for appointments, filled out forms, and kept track of medications. Now imagine those needs are your responsibility now – yikes! Transitioning to adult health care is a big step – just like going to college, getting your first adult job, or living on your own – transition requires preparation and self-advocacy. It’s never too early (or late) to ask your parent/caregiver or doctor questions about your health care needs!

Will I notice a difference in my care when I transition?

Transitioning your health care from a pediatric provider to an adult provider is exciting, yet a potentially nerve-wracking experience. However, always remember to be kind to yourself -you are learning a whole new responsibility and sometimes that can take time! You may find it helpful to begin independently managing your care around the age of 15-16 years old. That way, you will likely still have your parent(s) or guardian as well as your pediatric provider available to help guide you through becoming more independent. Create a plan with your parent(s) or guardian and your providers. Organize your care and ask questions, as this will help you begin navigating your transition to adult care. There are a lot of differences between pediatric and adult health care providers. However, as you begin the transition you’ll feel a change, but why? Well, when you’re a kid, your care involves the whole family — this is called child/family-centered care. When you transition to adult care, your care only involves you– this is called adult/patient-centered care.

Differences between Pediatric and Adult Health Care

**With exception of patients with special needs where parents/caregivers may have legal guardianship or power of attorney for health care needs

Will anyone be able to help me coordinate my care?

In pediatric healthcare, there are a lot care coordination options, but in adult healthcare there are very few. You will have to learn how to independently coordinate your appointments and care.

How should I prepare for my transition?

You should begin expressing interest to your parent(s)/legal guardian and health care provider (HCP) about becoming more involved in your care. Typically this is recommended to begin between the ages of 15-16 years old. Remember it is OK to start small, ask questions, and even ask for help. Transitioning your care comes with a lot of new responsibilities and it may seem overwhelming, but you will do great!

Tips for transitioning care:

• Requesting alone time with your clinician to practice becoming more independent in discussing your health care needs.
• Make a list of questions or concerns that you would like to discuss with your doctor
• Ask your health care provider (HCP) to explain information you do not understand
• Learn how to call in a prescription refill to your local pharmacy
• Request your own insurance card
• Ask your parent(s)/guardian about your medical conditions:

1) What is it?

2) When did it start?

3) For epilepsy: what do my seizure look like? Triggers?

4) Medications and/or rescue medications and dosages

• Ask for help making a list of your medical history (conditions, surgeries, family medical history, vaccinations) and medications (types, how much/when, medication allergies). Take pictures of the medications or keep a list in your phone for reference.
• Explore the portal to help you access your health and contact information. As you get older, it’s helpful to practice understanding and reviewing medical tests that were performed.
• Keep your health care providers phone number somewhere it is easily accessible.
• Practice scheduling and canceling appointments
• Ask for recommendations of adult primary care providers and specialists.