Epilepsy for Parents: Transition of Care from Pediatric to Adult Healthcare

Health care transition from pediatric to adult care is an exciting, yet potentially nerve-wracking, time for young adults, parents and caregivers. As a parent and caregiver, you’re familiar with many childhood transitions as your children grow and learn about the world. However, the transition into adolescence and young adulthood is perceived to be more challenging. Our youth are learning more about themselves, discovering their autonomy, and searching for more independence. It’s an interesting journey that sometimes creates apprehension for parents and caregivers, as they search for the best way to support their child. Many families do not consider health care transition until it’s suddenly upon them. Starting the conversation early with your pediatric providers can help make transition easier. An early start allows for consistent planning, proper guidance, and stronger communication between you, your child, and their health care provider. These actions will allow your child to achieve a level of health care independence that they are comfortable with, in turn providing comfort to you as a parent.

When should I begin planning my child’s transition?

Multiple medical organizations recommend parents/caregivers and doctors begin to plan for transition as early as 12 years of age, with incremental healthcare milestones achieved prior to full transition around 18-20 years old. Health care transition for those with special needs (chronic medical, behavioral, and/or intellectual disabilities) may require more in-depth planning and legal support.

Differences between Pediatric and Adult Health Care

System Characteristics	Pediatric Care	Adult Care
Practice Approach	Family-centered; shared decision-making with parents	Patient-centered; shared decision-making with young adult
Multidisciplinary Care Coordination and Specialty Clinics	Specialty clinics are often co-located and offer ancillary therapies Primary care and subspeciality clinics often have care coordination services More public care coordination programs available	Specialty clinics located in private offices and often need to refer out for ancillary therapies Few, if not rare, care coordination services between primary care and subspeciality clinics
Clinic Appointments	Longer appointments Youths may sometimes have alone time with clinician	Shorter appointments Legal health care confidentiality over age 18, unless given specific permission
Patient Role in Health Care Needs	Parent/Caregiver handles health care needs Providers offer more reminders and alternative care plans Providers have legal option to notify protection services	Patient solely handles health care needs ** Provider expectation of patient adherence to treatment plans/medications without reminders

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

To build self-care, a structured partnership between doctors, youth, and parents is vital. Parents can help their youth learn to manage their health care needs in the following ways:

Open discussions with your child about their medical condition.
Make a list. Help your child develop a list of their medical history, allergies, and medications.
Allow them to take more responsibility in taking their medicine.
Encourage your child to make appointments with their pediatric provider.
When you see their pediatric provider, discuss your child’s transition to adult healthcare. Consider asking:
- How should I best prepare my child to meet alone with you?
- What do they need to learn to get ready for adult health care? How should we assess their readiness?
- What information about privacy and consent should we learn? (State laws vary on adolescent privacy and confidentiality)
For youths with more complex, chronic medical and/or behavioral care:
- Can we prepare a medical summary for the new provider? When should we start?
- If my child needs help making medical decisions, where can I find information? Is legal support available?
Have a discussion about when your child should formally transition to adult providers and request suggestions. Inquire what kind of doctors the youth would require (i.e. primary care, specialists, ancillary therapies), along with referral suggestions, and how the process occurs.

Through a structured planning process with child, you, and their health care provider, your child can practice self-advocacy and prepare for their medical independence. Pediatric providers are available to assist with this journey!