Experts consider the importance of adherence in treating epilepsy and reflect on what might contribute to nonadherence in specific patients.
Kathryn A. Davis, MD, MS, FAES; Trevor J. Resnick, MD; Michael R. Sperling, MD
PUBLISHED March 05, 2019
Kathryn A. Davis, MD, MS, FAES: The other thing that I think is important here in this decision is cost, because a lot of times even in the extended release that are available in genetic forms, they’re much more expensive for patients. And so even if I think that it may be more appropriate to use an extended release, if the patient can’t afford it, then they’re not going to take it. And so that’s also a very important piece in decision making.
Trevor J. Resnick, MD: I think that’s point number 1.
Kathryn A. Davis, MD, MS, FAES: Yes.
Michael R. Sperling, MD: But sadly, the enhanced compliance of it, or adherence with extended release, often is much cheaper to the health care system as a whole, that visit that doesn’t take place to the emergency department because someone had a seizure. And for some reason that’s not factored into the equation. And that compliance difference between once a day, and twice and a day, and 3 times per day is enough to really generate extra health care system cost.
Trevor J. Resnick, MD: Yes, that’s such a great point. And actually I think about 3 to 4 years ago there was a flurry of abstracts at the AES [American Epilepsy Society] meeting that specifically addressed that issue of the cost to the system relating to adherence. And it was much cheaper to give it with improved adherence and prevent emergency department visits.
Michael R. Sperling, MD: But it’s very interesting because the insurance companies actually have different divisions, and the medications division has its own budget. The hospital division has its own budget and it’s a different….
Trevor J. Resnick, MD: It’s a different silo.
Michael R. Sperling, MD: It’s a different silo within the company and it actually gets missed. It’s an interesting thing. How do you address the issues of medication adherent issues with your patients, Kate? Let’s say it’s obvious that the person is not taking it because they tell you. Or, again, you can see it if the drug is being refilled far less frequently than it should.
Kathryn A. Davis, MD, MS, FAES: Or their levels are very low.
Michael R. Sperling, MD: Or their level is 0.
Kathryn A. Davis, MD, MS, FAES: Yes.
Michael R. Sperling, MD: So how do you address it, and what are the issues that you think come up in that circumstance?
Kathryn A. Davis, MD, MS, FAES: This comes up all the time. I think there are some age demographics, particularly the teenager, 20-something, more in that “I feel invincible” range. That age range has more difficulty. But it’s across all age ranges and there are a variety of different reasons from cognitive as the etiology to they don’t feel they need medications, to their not spending the night in the same bed every night and they just don’t have access to their medications. And so depending upon the issue, I try to address that.
One thing that seems very intuitive, but a lot of patients aren’t just doing this, is using the cell phone that almost every one of my patients at least is carrying around with them, and setting an alarm to remember to take their medication. I tell patients to set the alarm and hit the snooze button until they actually swallow their pills. That seemed to actually help a lot. Also using pillboxes. If patients need supervision, particularly if they’re a cognitively impaired patient, getting a caregiver involved in helping them set up their pills on a weekly basis. But a critical part of an epileptologist’s job, or a neurologist’s job, taking care of epilepsy patients is to address these issues and give them tools.
Trevor J. Resnick, MD: Yes, I think you’re right, it’ll cause multiple interventions. In terms of the counseling. I think SUDEP [sudden unexplained death in epilepsy] comes up as a part of the discussion with many of these patients. And some patients, we’re doing it to scare the living daylights out of them. But it’s really to put it into context that epilepsy is not necessarily a benign disorder in some patients. And there are significant morbidity and mortality issues that have to be kept in mind, that there are statistical numbers that you can attach to it. And I think speaking to patients about that is important. It’s the gorilla in the room that we don’t like talking about but that’s important.
The other big one for me as a pediatric hepatologist is the issue of driving, especially for the adolescents. Because if you tell them that if they have a breakthrough because they are not compliant, the clock starts again at 0 and driving is a big driver of them taking their medication, that’s a big point too. So I think you have to almost have your list of things to bring up too.
Michael R. Sperling, MD: For me there’s a second elephant in the room and that is why they’re not taking it, because they have adverse effects from the drugs often.
Trevor J. Resnick, MD: Yes, good point.
Michael R. Sperling, MD: That’s something I ask, “You’re missing it. Does it bother you?” And then when they’ve initially denied it, “The drug is fine, it doesn’t bother me,” well, they’re not taking it very often which is why it doesn’t bother them. “But you’re missing doses. Is that because you don’t feel well?” It’s amazing how often people will reflect that, yes, they don’t feel very well when they’re having it. The student who has to go to school in the morning, but if he takes his medicine before going to class and he has a test coming up, he can’t function as well. Or, you know, another person has a presentation at work and she can’t function at the level that she wants to. So I think it’s a good reason to think again about potential adverse effects and address that.
I also use the toothbrush approach with people. Do you brush your teeth every day? How many times a day? OK, twice a day is what you should be doing. If you’re doing that, put your pillbox next to your toothbrush. When you take it, it’s there, you can’t miss it, and the cell phone with the reminder. I even tell them sometimes, set it twice.
Kathryn A. Davis, MD, MS, FAES: Right. Well if you hit snooze instead of dismiss, that works. I think this is to Mike’s point with minor adverse effects that patients are brushing under the rug initially but then are contributing to their nonadherence. That’s an instance where I may not want to completely change their medication, but I may, as Trevor suggested before, switch to an extended release variety. One example is with levetiracetam. Sometimes that makes people feel sleepy during the day, switching it to extended release and all at night, that opposite example of insomnia with lamotrigine, where switching it to extended release and giving it all in the morning can sometimes be a small change that makes a huge difference in day-to-day quality of life.