Authors :
Presenting Author: Julianne Brooks, MPH – Massachusetts General Hospital
Hammad Akram, MBBS, MPH, CIC, GCAM – Massachusetts General Hospital; Maria Donahue, MD – Massachusetts General Hospital; Poojith Nuthalapati, MD – Department of Neurology – Massachusetts General Hospital; Jeffrey Buchalter, MD, PhD – Department of Pediatrics – Cumming School of Medicine, University of Calgary; Kathleen Farrell, MD, MB, BCH, BAO – Mission Outcomes Team – Epilepsy Foundation; Susan Herman, MD – Department of Neurology – Barrow Neurological Institute; Sahar Zafar, MD, MSc – Department of Neurology – Massachusetts General Hospital, Harvard Medical School; Nicholas Abend, MD, MSCE – Division of Neurology – Children’s Hospital of Philadelphia & Departments of Neurology and Pediatrics; Jacob Pellinen, MD – Department of Neurology – University of Colorado School of Medicine; David Ficker, MD – Department of Neurology – UC Gardner Neuroscience Institute; Shawna Benard, MD – Department of Neurology – Keck Medicine of University of Southern California; Brandy Fureman, PhD – Mission Outcomes Team – Epilepsy Foundation; Lidia Moura, MD, MPH, PhD – Department of Neurology – Massachusetts General Hospital, Harvard Medical School
Rationale:
With epilepsy affecting over 70 million people worldwide, ensuring effective treatment is crucial.
1 Anti-seizure medications (ASMs) are widely prescribed to reduce seizure frequency.
2 However, the absence of a real-world data registry has hindered establishing benchmarks for medication adherence and identifying treatment barriers.
3 In this study, we identify key quality measures within Epilepsy Learning Healthcare System (ELHS) and opportunities for care improvement.
Methods:
In this cross-sectional descriptive study, we sampled data from 2987 people with epilepsy
>18 years of age from 3/2019-3/2023 at six academic institutions across the U.S. participating in ELHS. We excluded 2441 with an incomplete Barriers to Medication Adherence (BMA) Checklist (analytical sample N = 546). BMAs were described in the overall sample and stratified by age, race, ethnicity, and gender. The data were analyzed using R programming language.
Results:
The mean age was 43 years (N=546, SD 17). Most patients were women (56%), Caucasian (74%), and non-Hispanic (92%). Within the sample of checklist respondents, 287 (52%) reported having BMAs. As shown in Table 1, 61% of women and 36% of men reported barriers to medication adherence, 49% of Caucasians, 86% of Black/African Americans, and 32% of Asians reported barriers. Equal proportions of Hispanics and non-Hispanics (50%) reported barriers. Trouble remembering to take medication was the most common barrier reported (60%), followed by experiencing side effects (23%) and access issues (20%) (Figure 1).
Conclusions:
Our study shows low rates of screening for barriers to medication adherence across multiple academic institutions. Among respondents, BMAs were substantial and varied across categories of gender, race, and ethnicity, emphasizing the importance of collecting data on BMA from people with epilepsy to identify opportunities for improving healthcare delivery.
- Thijs RD, et al. Epilepsy in adults. Lancet. 2019 Feb 16;393(10172):689–701.
- Chen Z, Brodie MJ, Liew D, Kwan P. Treatment outcomes in patients with newly diagnosed epilepsy treated with established and new antiepileptic drugs a 30-year longitudinal cohort study. JAMA Neurol. 2018;75(3):279–86.
- O’ Rourke G, et al. Identifying the barriers to antiepileptic drug adherence among adults with epilepsy. Seizure. 2017;45:160–8.
Funding:
ELHS is supported by grants from PCORI and the James M. Anderson Center for Health Systems Excellence (RI-PCC-2017 (sub: 03699), the CDC (1NU58DP006256-02-00), the National Association of Epilepsy Centers, Greenwich Biosciences, Eisai, and Sunovion. Although funded by the CDC, the contents of this publication are solely the responsibility of the Epilepsy Foundation and do not necessarily represent the views of the CDC.