Preparing Adolescents With Epilepsy to Manage Care through Adulthood

As children with epilepsy get older, managing their own care is critical to their independence, ability to drive, go to college, seek employment and eventually start a family if they choose to do so.

And as more children with the neurological disorder survive into adulthood, ensuring a smooth transition in care is even more important.

Now, clinicians at Michigan Medicine have developed a tool to help them better prepare adolescents and young adults to take ownership of their disease well before the time comes.

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Through a customized screening tool for 16 to 26 year-olds, doctors are effectively able to monitor their patients' development of knowledge and self-management skills  regarding their condition, according to a report in Epilepsia Open. This structure allows providers to proactively address gaps in readiness that may impact long term health outcomes.

"Many young adults with epilepsy are not prepared for the major transition between pediatric and adult care," says senior author Sucheta Joshi, MBBS, pediatric neurologist and epileptologist at Michigan Medicine C.S. Mott Children's Hospital.

"This tool will allow physicians and caregivers to better assess the knowledge and skills adolescents and young adults already have and to understand where additional information, explanation or practice is needed. Our top goal is to help youth gain experience and confidence in their ability to manage their own health care to ensure they are as successful as possible when making the jump to adult care. We want this to be an educational journey."

When children are little, Joshi notes, their parents are often handing them their medicine, telling them when to take it, managing appointments and refills and helping them plan for emergencies.

But once they're in their teens and early twenties, most of these responsibilities fall on them. This occurs as they switch from the pediatric setting, which typically offers extra support, compared to the adult setting, which expects patients to be independent. And at the same time, these young adults may be living on their own for the first time.

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"The change from pediatric to adult care is a major transition for patients with epilepsy. There's concern that if a patient can't make this transition well, they are at higher risk of not seeing doctors in a timely fashion, running out of medications or having unexpected seizures without a plan to respond safely," Joshi says.

When seizures aren't managed effectively, they can put patients in dangerous situations.

"These are risks we especially worry about the first few years after young people transition from pediatrics to adult neurology when they're likely to be most vulnerable," Joshi says.

The new screening tool, called EpiTRAQ, was adapted from a well‐validated general assessment tool. It asks 35 questions about epilepsy over six different health categories. The goal was to develop a short and easy assessment that could be used in clinic every six months.

"We recognized the need to adapt this general readiness assessment tool so that it addresses the unique needs of adolescents and young adults with epilepsy," says lead author Sarah Clark, M.P.H., pediatric research scientist at the Susan B. Meister Child Health Evaluation and Research Center (CHEAR) at Michigan Medicine.

"We found that EpiTRAQ is a valid and reliable tool for this population."

The screening includes such questions as how epilepsy affects daily life activities like self-care and shopping. And whether the patient knows how to speak with their doctor about their medical condition, keep track of their seizures and the name of their medications.

And most importantly, do they know their "emergency rescue plan" in the case of seizures.

Patients are graded in confidence of different areas of their health management, helping providers identify and address gaps.

"When a 21-year-old goes to the doctor and is asked 'how many seizures have you had in the last six months?' they need to be able to answer that accurately," Joshi says. "That's something parents often keep track of when kids are little, but patients should know how to track these areas when they go to college and have a job."

Women of childbearing potential with epilepsy also have questions around reproductive health, including how seizures may affect their ability to have children and impact a pregnancy and how seizure and birth control medications affect one another.

A team approach by both the pediatric and adult providers is also key in ensuring a successful transition in care, Joshi says. At Michigan Medicine, Joshi credits adult neurologist and epileptologist Nicholas Beimer, M.D., as a lead partner in bridging the gap between pediatrics and adult epilepsy care.

"A critical piece in setting young people up for a successful transition in care is a strong partnership between pediatric and adult neurologists," Joshi says. "We're fortunate to have such a collaborative relationship with our adult neurologists at Michigan. One of us helps the patient start their journey while the other helps them continue that journey into adulthood."