Dr Elizabeth Thiele

Elizabeth A. Thiele, MD, PhD

Expert Perspective

2017 American Epilepsy Society Annual Meeting

Headshot
Practice Community
Boston, MA
Practice Niche
Pediatric patients with epilepsy
Hospital and Institute Affiliations
Director, Pediatric Epilepsy Program; Director, Carol and James Herscot Center for Tuberous Sclerosis Complex Massachusetts General Hospital; Professor of Neurology, Harvard Medical School

Question

Nonadherence to antiepileptic drugs (AEDs) has been identified as a risk factor for an unsuccessful transition from pediatric neurologist care to adult neurologist care. What strategies can be employed to engage pediatric patients in taking ownership of medication adherence?

Answer

There are many factors and reasons that lead to nonadherence to antiepileptic drug treatment in the adolescent/young adult epilepsy population. One reason is that many individuals in this age range are angry that they have to take medications and angry that they have epilepsy, so they purposely stop taking their medications.

One strategy we have used is to encourage adolescents to “look the demon in the eye” and try to empower them — that reliably taking their medications helps “defeat the demon”; that is, seizure control. We also routinely have a social worker meet with our adolescent patients to help address their attitudes about their epilepsy. We also try to empower them to take charge of their own medication, which helps optimize their independence, further “defeating the demon.”

Another reason for medication noncompliance is the patient’s inability to remember to reliably take their medication. We always discuss strategies to make this possible, from setting phone alarms to carrying an extra dose of medication on a keychain. This particularly becomes an issue when our patients go to college, where schedules are very irregular. Taking the time to have the discussion is often effective by acknowledging that this can be an issue and trying to troubleshoot in a way that would work for each patient.

We also see this problem arise in patients with good seizure control who become lackadaisical, which recently happened to one of my patients who is an honor student in college. He had been seizure-free for 2 years and thought that he might not need his medication anymore, or at least could miss a dose here or there, and had a seizure. My lesson from this experience is to have a discussion with each patient regarding the need for adherence to treatment and the effect if a seizure recurrence occurs because of missing medications.

Question

Driving is an important aspect to be discussed when transitioning a pediatric patient to adult care. What considerations should be given when adolescent patients with epilepsy present for medical clearance to drive a motor vehicle?

Answer

In Massachusetts, patients need to be seizure-free for 6 months, and this timeframe varies from state to state. When our adolescent patients reach 15 to 16 years of age, we discuss driving to assess whether it is a goal for the patient. If so, we discuss the importance of medication adherence while driving. If the patient has a generalized epilepsy (ie, absence epilepsy), we also will consider obtaining a 24-hour video electroencephalogram to ensure the patient is not having subclinical seizure activity, which could affect his or her ability to safely operate an automobile.

For our patients with intellectual disabilities, we often have our neuropsychologist evaluate the patient to determine from a clinical perspective if the patient could safely drive and be able to drive defensively (reaction time).

Question

Adolescents taking AEDs face unique challenges regarding contraception. Can you discuss how you balance the risk for AED teratogenicity with the need for seizure control and the potential drug-drug interactions between AEDs and hormonal contraceptives?

Answer

In our adolescent girls, we discuss this topic, including the often-decreased effectiveness of the contraception as well as decreased efficacy of the seizure medication, and we obtain trough AED levels before and after starting any oral contraceptive pill to adjust AED dose as needed, pending change in level. We discuss the possible teratogenicity of some of our medications, and if a patient decides to plan a pregnancy, we will then transition her to an adult epileptologist with experience in following women through pregnancy.

Question

In patients nearing legal age of decision-making (18 years in the United States), when do you consider formal neuropsychological testing for competence in medical decision-making?

Answer

By the time our patients reach 16 to 17 years of age, it will often already be clear by academic performance in school and level of support needed whether guardianship will be necessary. We also try to discuss this with families, as the process is a complicated one and can take some time. If we are uncertain whether patients will be competent to serve as their own guardian, we will refer them to our neuropsychologists for assistance.

Question

What specific strategies can clinicians consider employing when attempting a trial of AED withdrawal to assess whether epilepsy diagnosed earlier in childhood no longer requires medication?

Answer

Many children with seizure onset during childhood will “outgrow” their seizures. If a patient has been seizure-free for more than 2 years, it would be appropriate to obtain a follow-up electroencephalogram and, pending the results, consider tapering the medication. In my program, we do not taper medications in the senior year of high school as patients are heading off for college; that transition is already stressful for patients with epilepsy and their parents. We also do not taper if a patient will be participating in a semester-abroad program or any other situation where they would be significantly compromised if he or she had a breakthrough seizure (ie, driving required for school or for a job).

References

1. Andrade DM, Bassett AS, Bercovici E, et al. Epilepsy: transition from pediatric to adult care. Recommendations of the Ontario Epilepsy Implementation Task Force. Epilepsia. 2017;58(9):1502-1517.

2. Brown LW, Camfield P, Capers M, et al. The neurologist’s role in supporting transition to adult health care: a consensus statement. Neurology. 2016;87:1-6.

3. Schultz RJ. Transition of care in epilepsy: next steps. Oral presentation at: 2017 American Epilepsy Society Annual Meeting. December 1-5, 2017; Washington, DC.