Survey Highlights Gaps in Epilepsy Treatment Expectations and Communication

Findings from a national survey presented at the 2026 American Academy of Neurology (AAN) Annual Meeting, held April 18-22 in Chicago, Illinois, highlight significant disconnects between patients with epilepsy and their clinicians regarding seizure control expectations, treatment decisions, and risk discussions.^1,2

Led by Pavel Klein, MD, FAAN, FAES, of Mid-Atlantic Epilepsy and Sleep Center, the survey included responses from 500 U.S. patients with epilepsy and 450 clinicians, including neurologists, epileptologists, and advanced practice providers. Conducted in July 2025, the survey aimed to better understand how each group defines seizure control and navigates treatment decisions in routine care.¹

One of the most notable findings was the discrepancy in expectations for seizure control. While 63% of clinicians reported that achieving a 75% to 100% reduction in seizures is a realistic goal, only 46% of patients believed this level of improvement is attainable. Moreover, 78% of patients indicated they do not believe they will ever become seizure-free, underscoring a more pessimistic outlook among patients compared with their providers.

Communication gaps were also evident in how patients report seizure activity. According to the survey, 72% of patients acknowledged that they do not report all seizures to their clinicians. The reasons for underreporting varied, including concerns about losing independence, such as driving privileges (31%), forgetting to track seizures (21%), or perceiving events as not significant enough to mention (30%). Additionally, 25% of patients felt that reporting seizures would not meaningfully influence their treatment plan.

Despite these challenges, most patients appear engaged in their care. Nearly 90% reported asking about switching or adding medications to improve seizure control, yet 88% of clinicians noted hesitancy from patients or their families when new treatment options are proposed.¹ This tension reflects a broader issue of treatment inertia, where patients may express interest in improved outcomes but remain reluctant to pursue changes due to concerns about side effects (70%), effectiveness (57%), and cost (53%).

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The survey also identified disparities in discussions around treatment alternatives. While 65% of epileptologists reported routinely discussing alternative therapies, this was less common among general neurologists (35%) and advanced practice providers (44%). These differences may contribute to gaps in patient awareness, as more than half of patients (52%) indicated that having additional information about treatment options would help facilitate more productive conversations with their clinicians.

Another key area of disconnect involved discussions of sudden unexpected death in epilepsy (SUDEP), the leading cause of mortality in this population. Although 88% of clinicians reported discussing SUDEP with their patients, only 63% of patients recalled having such conversations. Notably, nearly one-fifth of patients with frequent seizures reported being unaware of SUDEP or not hearing about it from their provider.

These findings are particularly relevant given that approximately one-third of patients with epilepsy continue to experience seizures despite treatment, highlighting the ongoing unmet need in this population. The survey suggests that improving communication around treatment expectations, seizure reporting, and risk education may be critical to optimizing outcomes.

Overall, the results point to a multifaceted gap between patient perceptions and clinical goals. Aligning expectations around seizure control, addressing barriers to treatment changes, and ensuring consistent communication about risks such as SUDEP may help improve both clinical outcomes and patient engagement in epilepsy care.¹

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REFERENCES
1. Klein P, Nebro R. The “Hope, Hesitancy, and Hard Truths” survey: a patient and provider perspective on epilepsy treatment. Presented at: 2026 American Academy of Neurology Annual Meeting; April 18–22, 2026; Chicago, IL.
2. SK Life Science. Hope, Hesitancy, and Hard Truths: A Patient and Provider Perspective on Epilepsy Treatment infographic. 2025.