Transitioning From Pediatric to Adult Care

Someone diagnosed with epilepsy as a child will likely need to transition their pediatric-centered care to an adult setting before a certain age. This can be a stressful time for both the person with epilepsy and their family. They may have spent years building a relationship with their current doctor. Moving to a new doctor may produce anxiety.¹

The shift of care is often a complex process. It requires detailed planning to make sure efforts are well-coordinated between the doctors. The goal is for young people with epilepsy to manage their condition as they grow older.²

Epilepsy transition of care: Why is it needed?

Research has shown teenagers do not go to the doctor as often as they should. This can be a problem for teens with chronic diseases like epilepsy, which require self-management skills. The transition period may help young people with epilepsy understand the importance of keeping their medical appointments and regularly taking their medicines to avoid unexpected seizures.¹

Even if someone’s seizures stop during childhood, other medical conditions can arise as a result of epilepsy. They can develop learning problems or may experience sleep disturbances, depression, or other issues that need specialized medical care. Some forms of seizures can also develop into adulthood.³

What is involved in a transition of care?

A big part of the change in care process is the management of medicines. Older children and teens can keep track of the medicines they take and the amounts. Asking the pediatric doctor for the names of medicines previously taken might be needed as well.^1,2

The adult care team will want to know medical history, including the pattern of seizures. The adult care team will also want information about triggers that may worsen the young person’s seizures.^1,2

A transition of care plan often addresses emotional needs for young people as they enter adulthood. Medical insurance coverage also is an important topic to address. Educational and job needs, as well as coping skills for daily living, should be considered part of the plan. For example, transportation is often discussed since driving can be an issue for some people with epilepsy.^1,2

If a young adult with epilepsy is sexually active, discussing birth control should be part of the transition. This is because some birth control medicines and anti-seizure drugs interact with each other.¹

When should a transition of care take place?

It is important to remember that each child and their path to adult epilepsy care is different. In general, families may want to begin the discussion about transition of care when a child is between the ages of 10 and 12. By the time a young person with epilepsy turns 18, they should have a relationship in place with a doctor who cares for adults with epilepsy.^1-3

A transition of care plan is a gradual process that does not take place overnight. It sometimes can take several years. Starting the process early can lead to better outcomes for teens as they enter adulthood.²

Would you like to talk to others in the epilepsy community about transitioning from pediatric to adult care? Reach out in one of our forums.