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

Epilepsia. 2021 Jan;62(1):41-50. doi: 10.1111/epi.16779. Epub 2020 Nov 30.


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.

Keywords: COVID-19; access to care; epilepsy; pandemic; stress; teleneurology.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Anticonvulsants / therapeutic use
  • Attitude to Health*
  • COVID-19 / complications*
  • COVID-19 / psychology*
  • Cross-Sectional Studies
  • Epilepsy / complications
  • Epilepsy / psychology*
  • Epilepsy / therapy*
  • Female
  • Health Services Accessibility*
  • Humans
  • Male
  • Middle Aged
  • New York City
  • Patient Satisfaction
  • Remote Consultation
  • Stress, Psychological / complications*
  • Stress, Psychological / psychology*
  • Surveys and Questionnaires
  • Treatment Outcome
  • Urban Population*
  • Young Adult


  • Anticonvulsants