OBJECTIVE: Our epilepsy population recently experienced the acute effects of the COVID-19 pandemic in New York City. Herein, we aimed to determine patient-perceived seizure control during the surge, specific variables associated with worsened seizures, the prevalence of specific barriers to care, and patient-perceived efficacy of epilepsy care delivered via telephone and live video visits during the pandemic. METHODS: We performed a cross-sectional questionnaire study of adult epilepsy patients who had a scheduled appointment at a single urban Comprehensive Epilepsy Center (Montefiore Medical Center) between March 1, 2020 and May 31, 2020 during the peak of the COVID-19 pandemic in the Bronx. Subjects able to answer the questionnaire themselves in English or Spanish were eligible to complete a one-time survey via telephone or secure online platform (REDCap). RESULTS: Of 1212 subjects screened, 675 were eligible, and 177 adequately completed the questionnaire. During the COVID-19 pandemic, 75.1% of patients reported no change in seizure control, whereas 17.5% reported that their seizure control had worsened, and 7.3% reported improvement. Subjects who reported worsened seizure control had more frequent seizures at baseline, were more likely to identify stress and headaches/migraines as their typical seizure precipitants, and were significantly more likely to report increased stress related to the pandemic. Subjects with confirmed or suspected COVID-19 did not report worsened seizure control. Nearly 17% of subjects reported poorer epilepsy care, and 9.6% had difficulty obtaining their antiseizure medications; these subjects were significantly more likely to report worse seizure control. SIGNIFICANCE: Of the nearly 20% of subjects who reported worsened seizure control during the COVID-19 pandemic, stress and barriers to care appear to have posed the greatest challenge. This unprecedented pandemic exacerbated existing and created new barriers to epilepsy care, which must be addressed.
Seizure control, stress, and access to care during the COVID-19 pandemic in New York City: The patient perspective