Treatment Complacency Among Patients Living With Epilepsy, Caregivers, and Health Care Professionals
Patricia E. Penovich1, John M. Stern2, Danielle A. Becker3, Lucretia Long4, Nancy Santilli5, Eugenia Y. Peck6
1Minnesota Epilepsy Group, 2UCLA Department of Neurology, 3Penn Epilepsy Center, 4The Ohio State University Medical Center, 5Human Care Systems, Inc., 6Kantar Health
To evaluate treatment complacency among adult patients living with epilepsy, caregivers, and healthcare professionals (HCPs).
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.
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. 
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.
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.