Screening as a Network: Improving Barriers to Medication Adherence in ELHS
Abstract number :
2.435
Submission category :
13. Health Services (Delivery of Care, Access to Care, Health Care Models)
Year :
2025
Submission ID :
1347
Source :
www.aesnet.org
Presentation date :
12/7/2025 12:00:00 AM
Published date :
Authors :
Presenting Author: Kathleen M. Farrell, MB BCh BAO – Epilepsy Foundation
Julianne Brooks, MPH – Massachusetts General Hospital; Harvard Medical School
Lidia M.V.R. Moura, MD, MPH, PhD – Massachusetts General Hospital; Harvard Medical School
Jeffrey Buchhalter, MD, PhD – Epilepsy Foundation
Brandy Fureman, PhD – Epilepsy Foundation of America
Rationale: The Epilepsy Foundation launched the Epilepsy Learning Healthcare System (ELHS) as a learning health network in 2019. ELHS is grounded in co-production between patient family partners (PFPs), clinicians, researchers and community service providers. Participation in ELHS has improved the level of epilepsy care at member centers by standardizing seizure outcome assessments1,2,3 and introducing standardized screening for Barriers to Medication Adherence (BMA) in people with epilepsy, so that those barriers can be addressed with resources and referral to community services.
1Jones F, et al. Implementing standardized provider documentation in a tertiary epilepsy clinic. Neurology. 2020 Jul 14;95(2), e213-e223.
2Fernandes M, et al. A replicable, open-source, data integration method to support national practice-based research & quality improvement systems. Epilepsy Res. 2022 Oct;186:107013.
3Donahue M, et al. Barriers to Medication Adherence in People Living with Epilepsy. Neurol Clin Pract. 2025 Feb;15(1).
Methods: Clinicians and PFPs co-produced and tested a Barriers to Medication Adherence Tool (BAT), corresponding resources for each barrier and an algorithm to match and deliver them quickly in a busy clinic setting. All tools were made available in English and Spanish to both ELHS teams and to the public via the Epilepsy Foundation. In this retrospective study of ELHS Registry data collected from 2019-2025, we analyzed rates of various barriers among pediatric and adult patients attending an ELHS center. Here, we demonstrate the relative contribution of specific barriers to the "vital few" using a Pareto analysis displaying cumulative frequency of barriers to taking medication as prescribed.
Results: 22,771 individuals were screened with the patient-reported BAT, including 15,987 adults and 6,669 children. 115 individuals were missing age. The average age was 34 years (sd 21.8) and the sample was 52% female, 70% white and 82% non-Hispanic or Latino. Nearly 20% of individuals reported at least one barrier, with some reporting multiple. The top network-wide barriers of "remembering to take medication," "side effects," and "access" respectively accounted for over 50% of cumulative frequency. Within access were issues pertaining to insurance coverage, affordability, running out of medication and difficulty getting to a pharmacy. With additional barriers of "other" and "medication doesn't always help the seizures," cumulative frequency increased to 80%.
Conclusions: Without a clear picture of adherence, medication effectiveness cannot be appropriately determined. The proportion of BMA among the individuals in the ELHS Registry is high, consistent with previous literature. "Remembering to take medication" is the single largest barrier contributing to non-adherence in this large cohort of people with epilepsy.
Funding: The ELHS Network has been supported by the Epilepsy Foundation, member clinical centers, the Quality Improvement Science Leadership Consortium, and the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services (HHS) under cooperative agreement number NU58DP006965.
Health Services (Delivery of Care, Access to Care, Health Care Models)