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Abstract Details

Unique Quality of Life Priorities for People with Epilepsy and Comorbid Non-epileptic spells
Epilepsy/Clinical Neurophysiology (EEG)
P6 - Poster Session 6 (5:00 PM-6:00 PM)
10-005
A distinct core outcome set (COS) for measuring quality of life (QOL) among people with epilepsy syndrome (ES) and non-epileptic spells (NES) has not yet been established, and further studies are needed to understand this patient population’s priorities in QOL measurement.
ES and NES commonly coexist. People who live with both conditions (ES + NES) report different contributing factors to quality of life (QOL) compared to people with ES only.
We analyzed cross-sectional data collected from an existing Delphi consensus study that defined a QOL COS for adults with epilepsy with or without comorbid NES. Participants assigned importance rankings via a 9-point Likert scale to 248 QOL outcomes spanning 26 domains. A potential COS inclusion list was identified via established consensus thresholds. Group differences for QOL priorities between those with and without comorbid NES were evaluated by Wilcoxon rank-sum tests.
Of 291 adults with self-reported epilepsy diagnosed by a physician, 269 had ES and 22 had ES + NES. People with ES + NES assigned critical importance to a larger number of QOL outcomes across a wider range of domains, particularly in functional, psychiatric, and healthcare utilization areas. A total of 38 QOL outcomes were rated as critically important for potential inclusion in a COS for people with ES + NES. There were differences in QOL priorities between groups, with people with ES + NES assigning higher importance to having questions on suicidal ideation and healthcare utilization items related to high-acuity, frequent, and prolonged encounters with the healthcare system.
Measuring QOL in people with ES + NES requires an overlapping but distinct COS when compared to people with ES. People with ES + NES assigned greater importance to suicidality and healthcare utilization items, supporting the need for a dedicated COS for this patient population.
Authors/Disclosures
Kathleen Cui, BA
PRESENTER 		Ms. Cui has nothing to disclose.
Robert E. Moss Mr. Moss has stock in Seizure Tracker LLC. Mr. Moss has received personal compensation in the range of $10,000-$49,999 for serving as a partial owner of Seizure Tracker LLC with Neuropace. Mr. Moss has received personal compensation in the range of $10,000-$49,999 for serving as a partial owner of Seizure Tracker LLC with Epitel. Mr. Moss has received personal compensation in the range of $10,000-$49,999 for serving as a partial owner of Seizure Tracker LLC with TSC Alliance. Mr. Moss has received personal compensation in the range of $50,000-$99,999 for serving as a partial owner of Seizure Tracker LLC with UCB.
Vikram Rao, MD (UC San Francisco) Dr. Rao has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Precisis GmbH. Dr. Rao has received personal compensation in the range of $500-$4,999 for serving as a Consultant for iVEAcare. Dr. Rao has received personal compensation in the range of $100,000-$499,999 for serving as a Consultant for Echo Neurotechnologies. Dr. Rao has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for NeuroPace, Inc.. Dr. Rao has received personal compensation in the range of $5,000-$9,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Elsevier. Dr. Rao has or had stock in Novela Neurotechnologies.Dr. Rao has or had stock in EnlitenAI.Dr. Rao has or had stock in Doximity, Inc.Dr. Rao has or had stock in Theta Neurotech.Dr. Rao has or had stock in Encephalogix.Dr. Rao has or had stock in Echo Neurotechnologies.
Sharon Chiang, MD, PhD (UCSF) Dr. Chiang has stock in EpilepsyAI. Dr. Chiang has received research support from UCSF Clinical and Translational Science Institute UL1 TR001872. The institution of Dr. Chiang has received research support from NIH R25 NS070680 .