Beliefs About Anti-seizure Medications in Seizure-free Adults with Epilepsy
Max Kuster1, Jordan M. Silva2, Kara A. Manuel2, Palak S. Patel3, Marla Reid4, Katherine Mortati4, Arthur C. Grant4, Chloé E. Hill5, James F. Burke6, Samuel W. Terman5, Susanna S. O'Kula4
1SUNY Downstate Health Sciences University, 2University of Michigan Medical School, 3JFK University Medical Center Department of Neurology, 4SUNY Downstate Department of Neurology, 5University of Michigan Department of Neurology, 6The Ohio State University Department of Neurology
Objective:
To explore patient and caregiver views about tapering antiseizure medications (ASM) and perceptions of medication effectiveness.
Background:
Little is known about patients’ or their caregivers’ views about ASM tapering after a period of seizure control.
Design/Methods:
We conducted in-person or virtual semi-structured interviews including survey questions with 15 adults with epilepsy (or their caregivers) who were seizure-free >1 year and followed by neurologists at an urban academic institution.
Results:
Of 15 subjects, 9 (60%) were female, 14 (93%) were African American, and the median age was 46 years (interquartile range [IQR] 36-61). Six (40%) subjects took >1 ASM, and two (13%) took no ASMs. Median seizure-free duration was 2.3 years (IQR 1.5-3.9). Three (20%) interviewees answered for a family member with cognitive impairment.
From 1 (“Strongly disagree”) to 7 (“Strongly agree”), the median was 5 (IQR 4-7) regarding whether interviewees would consider tapering ≥1 ASM if their doctor recommended it. When asked how effective their ASM is from 0 (“doing nothing”) to 10 (“guaranteeing seizure-freedom”), median response was 9 (IQR 8-10). When asked how effective an ASM needed to be to continue taking it, median response was 8 (IQR 6-10). On a subsequent question, 12 (80%) indicated any type of seizure reduction (frequency or severity) would make an ASM worth taking. From 1 (“Not at all bothersome”) to 7 (“Very bothersome”) regarding taking ASMs, median response was 3 (IQR 1-6); one (6.7%) felt ASMs were doing more harm than good.
Conclusions:
Interviewees perceive ASMs to have high efficacy and relatively low burden. While interviewees often indicated they would continue ASMs only if almost perfectly effective, further probing suggested even small reductions in seizure likelihood or severity would be sufficient for many. Future efforts should investigate specific factors influencing these perceptions and their impact on patients’ willingness to taper ASMs.