Treatment Experiences with Anti-seizure Medications (ASMs): Patient and Clinician Perspectives on Titration Burden, Quality of Life, and No-Titration Options
John Stern1, Danielle Becker2, Steve Chung3, Micheal Macken4, David King-Stephens5, Andrew Zillgitt6, Mohamad Koubeissi7, Brad Padilla8, Alvin Ong9
1Department of Neurology, UCLA School of Medicine, 2Department of Neurology, The Ohio State University Wexner Medical Center, 3University of Arizona, Banner–University Medical Center, 4Northwestern University Feinberg School of Medicine, 5Department of Neurology, University of California Irvine, 6Department of Neurology, Corewell Health William Beaumont University Hospital Neuroscience Center, 7Department of Neurology, George Washington University, 8Stratevi, LLC, 9Xenon Pharmaceuticals Inc.
Objective:
To compare the perspectives of patients with focal seizures (FS) and healthcare providers (HCPs) on anti-seizure medication (ASM) experiences during titration.
Background:
ASM titration is an understudied component of FS management. Few studies have characterized real-world titration experiences from both patient and HCP perspectives.
Design/Methods:
An IRB-approved web survey of patients with FS (N = 48; January 2025) evaluated patient titration experiences. Seven US HCPs (epileptologists with a mean 20 years in practice) completed 30-minute interviews about ASM titration and subsequently participated in a roundtable discussion (April 2025).
Results:
Patients self-reported barriers during titration, including difficulty following schedules due to frequent dose changes (42%) and disruptions to daily life from clinic visits and phone calls (42%). All HCPs (100%) identified drug–drug interactions (DDIs) as a titration challenge and reported difficulty managing cross-titration when switching ASMs to mitigate interaction risks.
Among patients, 85% reported feeling nervous during titration at least “some of the time,” whereas fewer than 15% of patients reported feeling “calm and peaceful” or “happy” “most or all of the time” during titration. All HCPs (100%) indicated that the titration process can be associated with stress for patients, providers, or both.
When considering an ASM without titration, 84% of patients agreed it would be easier to remember how to take the medication properly, and 77% agreed they would feel less anxious. The majority of HCPs (86%) agreed that minimal- or no-titration ASMs can lessen the burden for patients and providers.
Conclusions:
Patients and HCPs agreed that ASM titration can be burdensome and avoiding titration may offer benefits. Patients reported difficulty managing medication schedules and a negative impact on daily life during titration, while HCPs emphasized challenges with managing its complexity (e.g., cross-titration). These findings underscore the titration burden, with an opportunity to further integrate the patient voice in treatment decision-making.
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