Authors :
Presenting Author: John Stern, MD – Department of Neurology, University of California, Los Angeles, CA, United States
Danielle Becker, MD, MS – The Ohio State University Wexner Medical Center
Steve Chung, MD – University of Arizona, Banner–University Medical Center
Mícheal Macken, MD – Northwestern University Feinberg School of Medicine
David King-Stephens, MD – University of California Irvine
Andrew Zillgitt, DO – Corewell Health William Beaumont University Hospital Neuroscience Center
Mohamad Koubeissi, MD, MA, FAAN, FANA, FAES – George Washington University
Rationale: Titration of anti-seizure medications (ASMs) remains a critical yet often overlooked aspect of epilepsy management. The goal of this analysis was to gather both patient and expert perspectives on the practical realities of ASM titration, focusing on identifying key unmet needs and defining the burden on patients and healthcare providers (HCPs).
Methods: An IRB-approved survey of patients (N=48) focused on understanding their experiences during ASM titration. Then, a panel of seven expert U.S. epileptologists, with an average of 20 years in practice, participated in a roundtable, where discussion topics were informed by prior in-depth interviews with the same experts and by the patient survey. The roundtable was recorded, transcribed, and analyzed using qualitative thematic analysis by two independent analysts to identify salient themes related to ASM titration.
Results:
Thematic analysis identified ASM titration burden as a key theme with three distinct subthemes: (1) Greater complexity of clinical management; (2) Increased strain on healthcare resources; and (3) Underrecognized burden to both patients and HCPs.
Greater complexity of clinical management, specifically the use of cross-titration, was identified as a key challenge. During cross-titration, experts noted the challenge of balancing tolerability, safety, seizure control, and patient adherence while also monitoring medication burden and pharmacokinetic interactions. Experts noted that patients completing the survey also identified this complexity, with 17 (35%) patients reporting that they do not have a clear understanding of the titration process.
The increased strain on healthcare resources subtheme encompassed an increase in quantifiable events, such as emergency department visits, as well as less easily quantifiable events, such as communication with HCPs and office staff during titration. Six experts (86%) reported increases in time spent on patient outreach through various channels (telephone, online portals). Twenty-nine patients (60%) reported that the time required, and number of clinic visits and/or phone calls needed to reach the target dose were a challenge.
The underrecognized burden on patients and HCPs subtheme highlighted a disconnect, as experts viewed titration as routine but did not fully appreciate the challenges experienced by patients and non-specialist HCPs. However, all (100%) experts agreed that patients likely experience a greater burden than is generally recognized. Supporting this, 27 (56%) patients reported worry about experiencing breakthrough seizures during titration, 21 (44%) reported difficulty keeping up with ASM dose adjustments, and 19 (40%) reported difficulty understanding the titration steps.
Conclusions: These findings underscore the substantial and potentially overlooked burden associated with ASM titration on patients and HCPs, highlighting the need for improved patient-HCP communication and ASMs with simplified or no titration requirements. Increasing awareness of the burden of titration within the wider epilepsy community may improve patient care and HCP comfort levels.
Funding: Study funded by Xenon Pharmaceuticals Inc.