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Epilepsy Blog Relay: Improving Adherence Requires a Team Approach

This post is part of the Epilepsy Blog Relay™.

This blog post was submitted by Eisai, the Presenting Sponsor of the November 2019 Epilepsy Blog Relay.

Lucretia Long, APRN-CNP

Former Surgeon General C. Everett Koop once said, “Drugs don’t work in patients who don’t take them.” For people with epilepsy, treatment adherence is essential to optimal care and positive outcomes. Yet studies show that epilepsy patients don’t take their medications 30 to 60% of the time, which puts them at greater risk of breakthrough seizures. Missed medication doses are the number one cause of breakthrough seizures, which can cause significant injury. Nearly half of those with epilepsy report having a seizure following one missed dose.

“Adherence is a crucial part of the journey toward seizure freedom, but for many people with epilepsy, taking their medications on schedule can be very difficult,” said Lucretia Long, APRN-CNP, Ohio State University Wexner Medical Center. “The reasons for this can be as varied as the patients themselves, so it’s important that we collaborate with our patients toward a comprehensive, realistic plan of action that fits medication into their daily routine,” said Ms. Long.

Why is adherence such a big challenge?

In a study of 661 adults with epilepsy, 66% reported taking more than four pills per day, and more than one quarter (28%) were taking 7 or more pills daily. With this type of regimen, some people simply forget which medications to take and when. Others have busy schedules that don’t leave enough time to take their medicine on schedule.  Treatment side effects are also a common cause of non-adherence.

For health care providers, it can be difficult to find the right mix of medications for each patient. No health care providers can predict in advance whether an anti-epileptic drug (AED) will be effective for an individual. Some people achieve seizure freedom with the first medication they’re prescribed, while others take much longer to find the treatment that’s right for them. Factors including lifestyle, age, other medical conditions, type of seizures and treatment history all play a role.

Most people begin taking one AED at a low dose, and if that doesn’t work, the dose is increased. If that is still not effective or the person has difficulty with the side effects, the health care provider will typically switch to a different drug.  With more than 20 AEDs currently approved by the FDA, patients may have to try many different drugs before finding the “right” one, and it may become necessary to combine several treatments.

Adherence Strategies

While occasional missed doses are inevitable, there are proactive steps patients and health care providers can take to help patients stay on track with their medication. Researchers have suggested that a more patient centered approach to epilepsy care, focused on open provider-patient conversations, would go a long way toward improving adherence. Trust is also key, as patients who report a trusting relationship with their health care provider and feel more comfortable discussing missed doses are more likely to be adherent.

“Our goal is to get each patient on the lowest dose of medication with the simplest regimen as quickly as possible while minimizing side effects,” said Ms. Long “To achieve that, we need an honest, ongoing discussion about the person’s lifestyle, causes of missed doses, tolerance for side effects, and potential solutions that make sense for that individual.”

Additional strategies include:

  • Simplified, manageable dosing, as adherence rates have been shown to be higher among those on once daily treatment regimens versus those requiring two or more daily doses.
  • A reminder system that will alert the patient when it’s time to take medication and/or get a refill, coupled with a plan from the treating provider for what to do when pills are forgotten
  • Medication containers, such as those with a separate compartment for each dose or that digitally display the amount of time elapsed since the container was last opened
  • Improving patients’ understanding of epilepsy to help empower them toward better self-management

For more information on adherence and tips for discussing your treatment plan with your provider, watch episode #6 of the series “Breakthrough TV” on Facebook Live.


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