Abstract
OBJECTIVE: This study sought to understand issues facing people with epilepsy (PWE) during the lockdown period of the COVID-19 pandemic in the United States. METHODS: We conducted a cross-sectional study using a 20-question survey that used SeziureTracker.com, sent to eligible PWE and their caregivers on May 6th, 2020. Questions about demographics and medical history were used to calculate COVID mortality risk odds ratios (OR) compared to a low baseline risk group. RESULTS: In total, 505 responses were collected. Of these, 71% reported no change in seizure rates and 25% reported an increase in seizures, which they attributed primarily to disrupted sleep (63%) and decreased exercise (42%). Mortality risks from COVID-19 had median OR of 1.67, ranging 1.00-906.98. Fear about hospitalization (53%) and concern for loved ones (52%) were prominent concerns. Of the respondents, 5% reported stopping or reducing anti-seizure medications due to problems communicating with doctors, access or cost. Lower-risk COVID patients reported more fear of hospitalization (55% versus 38%, p<0.001) and anxiety about medication access (43% versus 28%, p=0.03) compared with higher-risk COVID patients. Increased anxiety was reported in 47%, and increased depression in 28%. Ten percent without generalized convulsions and 8% with did not know anything about epilepsy devices (VNS, RNS, DBS). SIGNIFICANCE: The COVID-19 pandemic presents unique challenges to PWE, including increased seizure rates, problems with access and cost of life-saving medications. Those with lower COVID-19 risk may have been marginalized more than those with higher risk. Efforts to protect PWE during major public health emergencies should take these findings into account.