TY - JOUR
T1 - Barriers to Medication Adherence in People Living With Epilepsy
AU - The Epilepsy Learning Healthcare System
AU - Donahue, Maria Andrea
AU - Akram, Hammad
AU - Brooks, Julianne D.
AU - Modi, Avani C.
AU - Veach, Jessica
AU - Kukla, Alison
AU - Benard, Shawna W.
AU - Herman, Susan T.
AU - Farrell, Kathleen
AU - Ficker, David M.
AU - Zafar, Sahar F.
AU - Trescher, William H.
AU - Sirsi, Deepa
AU - Phillips, Donald J.
AU - Pellinen, Jacob
AU - Buchhalter, Jeffrey
AU - Moura, Lidia
AU - Fureman, Brandy E.
AU - Yu, Alison
AU - Meier, Alissa
AU - Anderson, Allie
AU - Egbert, Allison
AU - Gaines, Amanda
AU - John, Amanda
AU - Riisen, Amanda
AU - Kheder, Ammar
AU - Chima, Amy
AU - Paul, Anne
AU - Pounders, Ashley
AU - Rubin, Aura
AU - Modi, Avani
AU - Dworetzky, Barbara
AU - Shirley, Blanca
AU - Johnsrud, Bonnie
AU - Grzeskowiak, Caitlin
AU - Howell, Carrie
AU - Brocker, Cate
AU - Winters, Chelsea
AU - Nwankwo, Chinasa
AU - Heck, Christi
AU - Godale, Christin
AU - Byrnes, Courtney
AU - Hall, Crystal
AU - Ficker, David
AU - Bailey, Dawud Malik
AU - Holder, Deborah
AU - Rectenwald, Debra
AU - Sirsi, Deepa
AU - De Los Santos, Denise
AU - Jette, Nathalie
N1 - Publisher Copyright:
Copyright © 2024 The Author(s).
PY - 2024/11/27
Y1 - 2024/11/27
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85212510982&partnerID=8YFLogxK
U2 - 10.1212/CPJ.0000000000200403
DO - 10.1212/CPJ.0000000000200403
M3 - Article
AN - SCOPUS:85212510982
SN - 2163-0402
VL - 15
JO - Neurology: Clinical Practice
JF - Neurology: Clinical Practice
IS - 1
M1 - e200403
ER -