Seizure control, stress, and access to care during the COVID‐19 pandemic in New York City: The patient perspective

Abstract

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.

COVID-19 among patients with epilepsy: Risk factors and course of the disease

“…The results of our study are consistent with available reports suggesting that seizures in PWE are infrequently worsened by COVID-19 [3] , [14] , [15] . We noted seizure exacerbation in only one out of 17 patients with confirmed COVID-19.…”

“…Otherwise, our cohort was heterogenous in terms of epilepsy type, seizure frequency, pharmacotherapy, the presence of disabilities, comorbidities, and employment status. Similarly to other studies [3] , [6] , [14] , [15] , [16] , majority of patients reported limited access to health care during the pandemic.…”

“…Previous studies on COVID-19 prevalence among PWE are few and provide conflicting results. Suspected COVID-19 was found in 10.2% of surveyed PWE in New York City [3] and Cabezudo-Garcia et al reported a higher cumulative incidence of COVID-19 in PWE than in patients without epilepsy [12] , while the risk of contracting COVID-19 was not increased in PWE in the Iranian study [13] .…”

“…Moreover, electroencephalographic abnormalities have been reported in 90% of patients with SARS-CoV-2 infection [2]. A number of studies reported severe psychological distress, limited access to face-to-face epilepsy care, and difficulties in obtaining antiseizure medications in patients with epilepsy (PWE), resulting in seizure exacerbation in many cases [3][4][5][6]. Otherwise, the data on the prevalence of COVID-19 in PWE and the impact of infection on the course of epilepsy are limited [3,7].…”

COVID-19 and epilepsy: Russian and international experience

“…Rosengard и соавт. [11] во время пандемии COVID-19 не сообщили об изменении контроля над приступами 75,1% пациентов, тогда как 17,5% сообщили, что их контроль над приступами ухудшился, только 7,3% сообщили об улучшении. Пациенты с подтвержденным или подозреваемым COVID-19 не сообщали об ухудшении контроля над приступами.…”