Abstract Details

Title Life Challenges and Goals Among Patients Living with Epilepsy: Adult Patient, Caregiver, and Health Care Professional Perspectives

Topic Epilepsy/Clinical Neurophysiology (EEG)

Presentation(s) S13 - Epilepsy/Clinical Neurophysiology (EEG) 1 (2:24 PM-2:36 PM)

Poster/Presentation
Number 008

Objective To explore patient, caregiver, and healthcare professional (HCP) perspectives on life challenges faced by adult epilepsy patients.

Background Adults living with epilepsy face major life challenges, yet the majority are afraid to change their AED regimen and many do not report their real-life goals to HCPs.

Design/Methods An online survey of 400 adult patients with epilepsy, 201 caregivers, and 258 HCPs was conducted by Kantar Health in 2019. One section of the 10-part survey focused on life challenges faced in managing epilepsy.

Results 17% of patients reported being on their first antiepileptic drug (AED), 25% had changed AEDs once, and 58% had changed AEDs at least twice. 64% of patients, 67% of caregivers, and 83% of HCPs somewhat or strongly agreed that patients cannot live at their full potential. Nearly 50% of patients somewhat or strongly agreed that “I want to live a full life but do not share my real-life goals with my doctors because I think their focus is on clinical data, such as the number and type of seizures I am experiencing.” The majority (81%) of HCPs somewhat or strongly agreed that patients want to live normal full lives but end up not communicating their real-life goals to doctors. Patients (65%) and HCPs (76%) somewhat or strongly agreed that they do not want to change medications due to fear the epilepsy will worsen. Among patients, 67% somewhat or strongly agreed that “I did not expect to have to go through multiple medications to help control my seizures.”

Conclusions Adults living with epilepsy face major life challenges, yet the majority are afraid to change their AED regimen and many do not report their real-life goals to HCPs. There is an opportunity for patients, caregivers, and HCPs to work together to optimize the AED regimen to help adult patients attain real-life goals.

Authors/Disclosures
Lucretia Long, DNP, APRN-CNP, FAES (Ohio State University, Wexner Medical Center) PRESENTER	Mrs. Long has received personal compensation for serving as an employee of SKLife. Mrs. Long has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Neurelis. Mrs. Long has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for SKLife. Mrs. Long has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB. Mrs. Long has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Catalyst Pharmaceutical. Mrs. Long has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Liva Nova. Mrs. Long has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Neurelis. Mrs. Long has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for SK lIFE. Mrs. Long has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Liva Nova.
Danielle A. Becker, MD (University of Pennsylvania)	Dr. Becker has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Neurelis, Inc. Dr. Becker has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Sk life Science. Dr. Becker has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Supernus Pharmaceuticals. Dr. Becker has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Neurelis, Inc. Dr. Becker has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Sk Life Science. Dr. Becker has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Jazz pharmaceuticals. Dr. Becker has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for UBC. Dr. Becker has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for LivaNova. Dr. Becker has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Neuropace. Dr. Becker has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Supernus Pharmaceuticals.
Nancy Santilli, RN, PNP, MN	No disclosure on file
	No disclosure on file
	No disclosure on file

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