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Abstract Details

Communication Among Adult Patients Living With Epilepsy, Caregivers, and Healthcare Professionals: A 2-way Street?
Epilepsy/Clinical Neurophysiology (EEG)
P15 - Poster Session 15 (12:00 PM-1:00 PM)
12-006
To investigate communication among adult patients living with epilepsy, caregivers of adults with epilepsy, and healthcare professionals (HCPs) caring for epilepsy patients.
Although the majority of patients, caregivers, and HCPs report being satisfied with their communication, the dialogue may be fractured. HCPs may not be communicating as effectively as they think they are, and patients may not be reporting all relevant information to HCPs.
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 various aspects of communication among patients, caregivers, and HCPs, including challenges, satisfaction, quality, and unmet needs.
60%-70% of patients and caregivers reported being very or extremely satisfied with HCP communication, and HCPs reported being similarly satisfied with patient communication. However, survey responses revealed substantial differences in satisfaction (~20 percentage points) in the topics HCPs and patients discuss, including seizure severity, seizure frequency, side effects, increasing dose of current medication, implications of switching treatments, and sudden unexpected death in epilepsy (SUDEP). The survey revealed other areas of communication divergence between patients/caregivers and HCPs. 29% of patients and 37% of caregivers somewhat or strongly agreed with the statement “I do not know the meaning of a lot of words the HCP uses,” whereas 96% of HCPs somewhat or strongly agreed that “I explain what epilepsy is in a way that patients can understand it.” ~73% of HCPs somewhat or strongly agreed that “My patients do not tell me everything they should about their epilepsy,” and only 54% somewhat or strongly agreed that “I believe my patients report every seizure to me.”
These survey results highlight the opportunity to improve communication among patients, caregivers, and HCPs with an ultimate goal of improving outcomes among adults living with epilepsy.
Authors/Disclosures
Nancy Santilli, RN, PNP, MN
PRESENTER 		No disclosure on file
Lucretia Long, DNP, APRN-CNP, FAES (Ohio State University, Wexner Medical Center) 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 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.
No disclosure on file
No disclosure on file