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. 2025 Feb;15(1):e200403.
doi: 10.1212/CPJ.0000000000200403. Epub 2024 Nov 27.

Barriers to Medication Adherence in People Living With Epilepsy

Maria Andrea Donahue  1 , Hammad Akram  1 , Julianne D Brooks  1 , Avani C Modi  1 , Jessica Veach  1 , Alison Kukla  1 , Shawna W Benard  1 , Susan T Herman  1 , Kathleen Farrell  1 , David M Ficker  1 , Sahar F Zafar  1 , William H Trescher  1 , Deepa Sirsi  1 , Donald J Phillips  1 , Jacob Pellinen  1 , Jeffrey Buchhalter  1 , Lidia Moura  1 , Brandy E Fureman  1 ; as the Epilepsy Learning Healthcare System
Affiliations

Barriers to Medication Adherence in People Living With Epilepsy

Maria Andrea Donahue et al. Neurol Clin Pract. 2025 Feb.

Abstract

Background and objectives: Epilepsy affects approximately 1.2% of the US population, resulting in 3.4 million Americans with active epilepsy. Antiseizure medication (ASM) is considered the mainstay of treatment, effective for two-thirds of people with epilepsy (PWE), while at least one-third experience drug-resistant epilepsy. A significant percentage of PWE who are treated with ASMs report nonadherence to this type of medication, leading to potentially preventable seizures and the potential for being inappropriately classified as having drug-resistant epilepsy. Ongoing seizures are associated with increased morbidity, mortality, and health care costs, among other consequences. Recognizing when PWE struggle with ASM adherence is essential for creating effective interventions and prevention strategies to improve patient outcomes.

Methods: As part of the Epilepsy Learning Healthcare System Registry, we collected data from 2020 through 2023 from 4,917 individuals seen at 8 epilepsy clinics in the United States. In this cross-sectional study, we used logistic regression analysis to examine the relationship between patient-reported seizure control (or provider-reported seizure control for some sites) and endorsed barriers to medication adherence. In addition, we explored potential associations with demographic variables such as sex, race, and ethnicity. The data analysis was conducted using R version 2023.06.1 + 524.

Results: Overall, 18.4% (893/4,848) reported adherence barriers and 37.7% (1,447/3,834) reported seizure control, defined as no seizures for the preceding 12 months or longer. The most prevalent barriers were forgetting to take ASMs (48.2%), experiencing ASM side effects (29.2%), and feeling as if the ASMs were not helping in controlling seizures (21.3%). The PWE who reported adherence barriers had 0.6 lower odds of having seizure control compared with those who did not report barriers (95% CI 0.4-0.7) and 0.6 lower odds of having seizure control after adjusting for race, ethnicity, and sex (95% CI 0.5-0.7).

Discussion: We observed significant barriers to medication adherence and inadequate seizure control among adult PWE across 8 centers in the United States. This study suggests that PWE might benefit from standardized screening for adherence barriers with behavioral strategies to address these barriers offered during clinical encounters to personalize care.

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Conflict of interest statement

M.A. Donahue, H. Akram, and J. Brooks report no disclosures relevant to the manuscript; A. Modi reports NIH funding, Stipend for being the Editor for the Journal of Pediatric Psychology, Royalties from Elsevier on a book about adherence, and Consulting with Encoded Therapeutics; J. Veach. A.Kukla, and S. Benard report no disclosures relevant to the manuscript; S.T. Herman reports funding from Epilepsy Therapy Development Project, NIH (R01NS047029), and Epilepsy Foundation (Epilepsy Learning Healthcare System); K. Farrell reports no disclosures relevant to the manuscript; D. Ficker is a consultant at Best Doctors and Verana Healthcare, S. Zafar reports funding from NIH; D. Sirsi, D.Phillips, and J. Pellinen report no disclosures relevant to the manuscript; J.R.Buchhalter receives funding from Epilepsy Foundation (Epilepsy Learning Healthcare System), Epilepsy Study Consortium, Biocodex, UCB, and Epilog Clouds of Care; L.M.V.R.M. receives funding from NIH (1K08AG053380-01A1, 1R01AG062282-01), Epilepsy Foundation (Epilepsy Learning Healthcare System); B.E.F. receives salary support from the Epilepsy Foundation, research funding from UCB Biopharma (Human Epilepsy Project 2) and PCORI (RI-PCC-2017 [SUB: 303699] and PPRN-1306-04577). Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.

Figures

Figure 1
Figure 1. Example of Patient-Reported Outcome Data Collection in an ELHS Site
This workflow demonstrates how one ELHS site collects data in their outpatient Epilepsy Clinic. Leveraging institutional resources, this site was able to program patient-reported outcome (PRO) case report forms (CRFs) into the patient portal and the provider-reported outcome CRFs into their electronic health records (EHRs). DCC = Data Coordinating Center; ELHS = Epilepsy Learning Healthcare System.
Figure 2
Figure 2. Numbers of Barriers to Medication Adherence Reported per Patient
The number of barriers to medication adherence reported by the patient out of a checklist of 17 potential barriers, using patient-reported outcomes from PWE last visit.
Figure 3
Figure 3. Count of PWE Reporting Each Barrier to Medication Adherence With the BAT
Included in the patient-reported outcomes is the BAT reported by PWE out of 17 potential barriers. PWE can report multiple barriers, so counts will not add to the total number of individuals. Percentage is calculated as the number of PWE reporting the barrier out of the total number of PWE. *Access issues include “I run out of medicine,” insurance problems, “difficulty getting to pharmacy to pick up medicine,” and “I cannot afford the medicine.” BAT = Barriers to Medication Adherence Toolkit; PWE = people with epilepsy.
See this image and copyright information in PMC

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