Abstract Details

Title Treatment Complacency Among Patients Living With Epilepsy, Caregivers, and Health Care Professionals

Topic Epilepsy/Clinical Neurophysiology (EEG)

Presentation(s) S59 - Epilepsy/Clinical Neurophysiology (EEG) 4 (2:12 PM-2:24 PM)

Poster/Presentation
Number 007

Objective To evaluate treatment complacency among adult patients living with epilepsy, caregivers, and healthcare professionals (HCPs).

Background The online, 10-part STEP Survey (Seize the Truth of Epilepsy Perceptions) was conducted by Kantar Health on behalf of SK Life Science, Inc., from February-March 2019.

Design/Methods Adult patients with epilepsy (n=400), caregivers (n=201), and HCPs (n=258; 96=epileptologists/112=general neurologists/50=nurse practitioners/physician assistants) completed the STEP Survey.

Results The majority (58%) of patients (mean epilepsy duration=16 years) were on their ≥3rd antiepileptic drug (AED). In the past year, 52% of patients experienced 1-9 seizures while 31% had ≥10 seizures. Patients estimated reporting 45% of their seizures to their HCPs, and for the seizures not reported, 60% provided reasoning that they were not serious enough to mention. Alternatively, HCPs estimated that patients report 73% of seizures. HCPs were most frequently selected by all groups (patients=73%/caregivers=66%/HCPs=75%) as the persons who initiate conversation about changing AEDs and as those who typically initiate discussion about increasing dosage (patients=77%/caregivers=68%/HCPs=81%). Patient-initiated discussions were reported by 39% of patients for changing AEDs and 27% of patients for increasing AED dosage; 25% of patients reported they were likely to ask their HCP about changing treatments in the next 12 months. HCPs reported discussion of vagus nerve stimulation (21%), responsive neurostimulation (10%), and surgery (hemispherectomy=3%/corpus callostomy and multiple subpial transection=4%/lobe resection=8%/lesionectomy=11%). Among patients with ≥13 seizures/year, 27% reported referral to an epilepsy center. However, 61% of both patients and HCPs and 68% of caregivers reported a desire for a treatment map that tells patients to see an epileptologist/specialist as soon as they have symptoms.

Conclusions Treatment complacency appeared to be common among patients, caregivers, and HCPs, even though many patients continued to experience seizures. Improved reporting of all seizure occurrences and more frequent discussion of potential treatment changes, initiated by all groups, may be needed to optimize treatment outcomes.

Authors/Disclosures
Patricia E. Penovich, MD, FAAN PRESENTER	Dr. Penovich has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Engage therapeutics. Dr. Penovich has received personal compensation in the range of $0-$499 for serving as a Consultant for LVIS. Dr. Penovich has received personal compensation in the range of $0-$499 for serving as a Consultant for Monteris. Dr. Penovich has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for SK Therapeutics. Dr. Penovich has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Neurelis. Dr. Penovich has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Greenwich. Dr. Penovich has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for SK Biosciences. Dr. Penovich has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Neurelis. Dr. Penovich has a non-compensated relationship as a Comittee Member with American Epilepsy Society that is relevant to AAN interests or activities.
John M. Stern, MD, FAAN	Dr. Stern has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for UCB Pharma. Dr. Stern has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for SK Life Science. Dr. Stern has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Neurelis. Dr. Stern has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Ceribell. Dr. Stern has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Jazz Pharma. Dr. Stern has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for LivaNova. Dr. Stern has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Neurelis. Dr. Stern has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for LivaNova. Dr. Stern has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Sunovion. Dr. Stern has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Jazz. Dr. Stern has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for SK Life Sciences. Dr. Stern has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for MedLink Neurology. Dr. Stern has stock in DEARhealth. Dr. Stern has stock in Ceribell. Dr. Stern has received publishing royalties from a publication relating to health care. Dr. Stern has received publishing royalties from a publication relating to health care. Dr. Stern has received publishing royalties from a publication relating to health care. Dr. Stern has received publishing royalties from a publication relating to health care.
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.
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.
Nancy Santilli, RN, PNP, MN	No disclosure on file
	No disclosure on file

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