Abstract Details

Title The “Hope, Hesitancy, and Hard Truths” Survey: A Patient and Provider Perspective on Epilepsy Treatment

Topic Epilepsy/Clinical Neurophysiology (EEG)

Presentation(s) P11 - Poster Session 11 (11:45 AM-12:45 PM)

Poster/Presentation
Number 11-002

Objective To examine how patients with epilepsy and their healthcare providers define seizure control and approach treatment decisions.

Background A survey, Hope, Hesitancy, and Hard Truths: A Patient and Provider Perspective on Epilepsy Treatment, was conducted by Wakefield Research on behalf of SK Life Science, Inc.

Design/Methods The physician survey polled 150 U.S. neurologists, 150 epileptologists, and 150 advanced practice providers who treat patients with epilepsy. The patient survey polled 500 US patients with epilepsy under active treatment. Surveys were completed by email invitation and online survey between July 8-21, 2025.

Results (1) Seizure control: 63% of doctors believed that 75%-100% seizure reduction is a realistic goal for their patients, while 78% of patients believed being completely seizure-free is not achievable. Further, 72% of patients disclosed that they do not report all their seizures to their doctor, often due to concerns about their independence potentially being limited or not believing their seizures were “significant enough” to report. (2) Treatment discussions: nearly 90% of patients stated they had asked about switching medications for better seizure control, yet 88% of doctors reported hesitancy from patients or their families when suggesting new treatments. Additionally, 88% of physicians reported that they have discussed the risk of sudden unexpected death in epilepsy (SUDEP) with their patients, although only 63% of patients recall having such conversation.

Conclusions This survey shows that important gaps exist between patients and providers in their perceptions, especially around the definition of seizure control and concerns about switching medications. The survey highlights the importance of open dialogue between patients and their healthcare providers to help reduce seizure frequency, address risks like SUDEP, and optimize safe and effective treatment decisions.

Authors/Disclosures
Pavel Klein, MD, FAAN (Mid-atlantic Epilepsy and Sleep Center) PRESENTER	The institution of Dr. Klein has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Aquestive. The institution of Dr. Klein has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Neurelis. The institution of Dr. Klein has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for UCB Pharma. The institution of Dr. Klein has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for SK Life Sience. The institution of Dr. Klein has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Eisai. The institution of Dr. Klein has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Biogen. The institution of Dr. Klein has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Alliance. The institution of Dr. Klein has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Arvelle Therapeutics. Dr. Klein has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Aquestive. Dr. Klein has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Eisai. Dr. Klein has received personal compensation in the range of $50,000-$99,999 for serving on a Speakers Bureau for UCB Pharma. Dr. Klein has received personal compensation in the range of $50,000-$99,999 for serving on a Speakers Bureau for SK Life Sciences. Dr. Klein has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Sunovion. Dr. Klein has received personal compensation in the range of $0-$499 for serving as an officer or member of the Board of Directors for PrevEp. Dr. Klein has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for Fenwick . Dr. Klein has received research support from DOD/CURE.
Robert Nebro, PharmD (SK Life Science, Inc.)	Dr. Nebro has nothing to disclose.

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