Dr Aimee SmithAimee W. Smith, PhD
Despite the essential need for control of their seizures, many patients with epilepsy struggle with adherence. A number of these patients are refractory, and a large group are also younger in age—teenagers and adolescents—making adherence a difficult challenge to tackle for those providing their treatment.

NeurologyLive sat down with Aimee W. Smith, PhD, assistant professor of psychology, East Carolina University, who has studied adherence in this population, to discuss this problem. In turn, poor adherence can have an effect on quality of life, another aspect of epilepsy care which requires critical attention. Although there are no age-specific guidelines for improving adherence, there are free tools available for clinicians to utilize.

Smith offered a look at a number of those tools, as well as highlighted the need for clinicians to ensure the burden of responsibility of taking medications does not lie solely on the child. As well, she offered some advice for clinicians to take the time to measure quality of life in these patients—as well as adults—as the snapshot view physicians get often does not provide a full enough picture of each patient’s situation.

NeurologyLive: How do you approach the challenge of improving treatment adherence for patients with epilepsy?

Aimee W. Smith, PhD: There are a lot of different approaches we can take, and I've always encouraged really trying to match the approach with the specific patient—like specializing it for that specific patient. We know that, for example, one thing that works kind of across age groups is problem-solving. So, specifically identifying what's getting in the way of adherence. There are these screeners out there that patients can take about specific barriers to adherence. Forgetting is really common, maybe they run out of money and they can't get a refill, maybe they don't have transportation to get their refill—and then we can match different interventions based on those barriers.

If they, for example, are running out of money, then maybe it's more of a social work intervention. For transportation, we can get a lot of medications delivered right to their door. If it's forgetting, we have lots of different ways to provide reminders—maybe it's on their cell phone, maybe it's a friend or a family member texting them daily.

Different people like different systems, but I always like to encourage people to pair taking a medicine with a daily task that they won't leave the house without doing. Most people—most adults—won't leave the house without brushing their teeth, so just put your medication bottle by your toothbrush. That alone can improve adherence for a lot of people. It doesn't have to be a high-tech solution.

Are there any other recommendations for patients, particularly younger patients, to improve adherence?

There are a lot of trials out right now assessing eHealth interventions for adherence, and these are things like maybe your phone reminds you to take your medication, and you hit “yes” took it, but if you don't hit “yes” then you have a medication partner or buddy that gets an alert and says, “Hey, so-and-so hasn't taken their medicine.” Then you have that social support built-in to kind of check up on you.

This is really popular with providers for kids and teenagers. The teenagers don't always love it, but I've found some success with having them put a friend or a boyfriend or girlfriend in that partner role, and they find that a little bit more acceptable than mom or dad bugging them. You can get creative with people, and that's building on things that aren't new—social support and problem solving—but using them in ways that are acceptable to the families. Really, sometimes having like a 10- or 15-minute discussion can really identify what's getting in the way of adherence, and then find a solution to that. Adherence is not just 1 thing, it's not like everyone just forgets. That happens a lot, but there are other things that get in the way too.

Are there any formal recommendations for specific patient age groups?

I'd have to say there's no developmental guideline out there that says for preschool kids, here is what we should do for adherence, etc. We don't have anything like that. But I would encourage providers that there are some great resources through AES. The AES fellowship curriculum on adherence has some really specific ideas for how to improve adherence. They're not, again, age-specific necessarily, with the exception that like kids and teenagers can't be 100% responsible. We don't trust them to do a lot of things completely on their own, and I think that should include their medication. But we do want to see responsibility increase over time, that's appropriate with their developmental level. By the time that they're adults, we're not just kicking them out and saying, “We totally expect you to be 100% responsible, even though mom was 100% responsible when you were 17.” What we prefer to see as a reality, is at 12 to 13, we start talking about this transition to adulthood. It's starting to take your medication on your own, but it's also calling to make your refills, or calling and talking to the doctor, or going to the doctor's office to make your appointment, talking to the doctor during your visits, etc.

With adherence, we often think about just medication, but I think about the healthcare transition to adulthood for these teenagers that are so at-risk. We have to think about things like all of the different tasks that have to be done in order to get to adherence, and how we help the teenagers become independent in each of those tasks.

Is there anything else you feel is important to mention?

Another thing I think is really vital is, regardless of who's treating the epilepsy, measure the quality of life in some way. There are a lot of free measures out there like the PedsQL—we have an epilepsy-specific module that's free if you’re using it for clinical purposes. We have adult-specific quality of life measures and we have general quality of life measures that aren't even unique to epilepsy. If you see a ton of different neurology patients or are a general practitioner—you can still measure quality of life. I think a lot of times we make assumptions about how things are going for our patients, when really, we see a 30-minute snapshot that’s really focused on their medical characteristics. Quality of life encompasses medical, psychological, vocational, relationships, so many other systems that don't typically come up in a medical visit because there's no time. But, if you're screening for that, you can see how medical treatments or side effects or their epilepsy might impact those other areas, and how can I, as their provider, really help with the bigger picture of the person. Just measure it. That’s my request.

Transcript edited for clarity.