TY - JOUR
T1 - Seizure control, stress, and access to care during the COVID-19 pandemic in New York City
T2 - The patient perspective
AU - Rosengard, Jillian L.
AU - Donato, Jad
AU - Ferastraoaru, Victor
AU - Zhao, Dan
AU - Molinero, Isaac
AU - Boro, Alexis
AU - Gursky, Jonathan
AU - Correa, Daniel José
AU - Galanopoulou, Aristea S.
AU - Hung, Christine
AU - Legatt, Alan D.
AU - Patel, Puja
AU - Rubens, Elayna
AU - Moshé, Solomon L.
AU - Haut, Sheryl
N1 - Funding Information:
A.S.G. acknowledges grant support from the National Institute of Neurological Disorders and Stroke (RO1 NS091170, U54 NS100064), US Department of Defense (W81XWH‐18‐1‐0612), National Institute of Child Health and Human Development (U54HD090260), and American Epilepsy Society (seed grant), and research funding from the Heffer Family and Segal Family Foundations and Abbe Goldstein/Joshua Lurie and Laurie Marsh/Dan Levitz families. S.L.M. is the Charles Frost Chair in Neurosurgery and Neurology and acknowledges grant support from the National Institutes of Health (U54 NS100064, NS43209), US Department of Defense (W81XWH‐18‐1‐0612), Heffer Family and Segal Family Foundations, and Abbe Goldstein/Joshua Lurie and Laurie Marsh/Dan Levitz families.
Publisher Copyright:
© 2020 International League Against Epilepsy
PY - 2021/1
Y1 - 2021/1
N2 - 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.
AB - 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.
KW - COVID-19
KW - access to care
KW - epilepsy
KW - pandemic
KW - stress
KW - teleneurology
UR - http://www.scopus.com/inward/record.url?scp=85096895356&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85096895356&partnerID=8YFLogxK
U2 - 10.1111/epi.16779
DO - 10.1111/epi.16779
M3 - Article
C2 - 33258109
AN - SCOPUS:85096895356
SN - 0013-9580
VL - 62
SP - 41
EP - 50
JO - Epilepsia
JF - Epilepsia
IS - 1
ER -