Health care access, psychosocial outcomes and mental health in adults living with epilepsy during the COVID-19 pandemic

L. Mc Carthy; B. Mathew; L. J. Blank; G. Van Hyfte; E. Gotlieb; J. Goldstein; P. Agarwal; C. S. Kwon; A. Singh; M. Fields; L. Marcuse; J. Y. Yoo; E. Sivarak; K. Gururangan; A. Navis; N. Jetté

doi:10.1016/j.yebeh.2023.109617

Health care access, psychosocial outcomes and mental health in adults living with epilepsy during the COVID-19 pandemic

L. Mc Carthy, B. Mathew, L. J. Blank, G. Van Hyfte, E. Gotlieb, J. Goldstein, P. Agarwal, C. S. Kwon, A. Singh, M. Fields, L. Marcuse, J. Y. Yoo, E. Sivarak, K. Gururangan, A. Navis, N. Jetté^*

^*Corresponding author for this work

Neurology

Research output: Contribution to journal › Article › peer-review

Abstract

Purpose: People living with epilepsy (PLWE) have a higher prevalence of mental health comorbidities and poorer psychosocial outcomes compared to the general population. The aim of this study was to examine psychosocial outcomes, mental health, healthcare accessibility, and seizure burden in PLWE during the COVID-19 pandemic. Methods: We conducted a cross-sectional study of adults with epilepsy treated in an urban multicenter health system from 2021 to 2022. A standardized questionnaire assessed for COVID-19 history, comorbidities, access to antiseizure medications (ASMs) and neurological care, seizure burden, and psychosocial outcomes (e.g., employment, social and financial support). The Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) were administered to evaluate for depression and anxiety. Frequency and proportions for categorical variables and median and interquartile ranges for continuous variables were calculated. Results: Fifty-five PLWE participated (95 % response rate). Median age was 40 years (IQR 31.5–66.5), 61.8 % were women, 47.3 % had a bachelor's degree or higher and 29.1 % each had Medicaid and Medicare insurance. Race (from highest to lowest %) was: 32.7 % White, 20 % Black, 20 % Latinx, 14.5 % Asian, and 12.7 % selected “other” or “prefer not to say.” COVID-19 had been diagnosed in 21.8 % of participants. Symptoms of anxiety and depression were self-reported by 43.6 % and 34.5 % of patients, respectively, with many describing this symptom as new post-pandemic (37.5 % and 31.6 %, respectively). Using validated scales, 52.7 % had depression (PHQ-9 score ≥ 5) with 30.9 % having moderate/severe depression (PHQ-9 score ≥ 10), while 29.1 % had probable generalized anxiety disorder (GAD-7 score ≥ 8). Seizure burden increased in 21.8 % of participants, while 20 % reported fewer seizures and 29.1 % were seizure free since the COVID-19 pandemic. Economic impacts of the pandemic included job loss (25 % amongst those employed at onset of pandemic), new or worsened financial difficulties (40 %), and new or worsened social support issues (30.9 %). Of all participants, 18.2 % reported difficulties accessing ASMs and 25.5 % cancelled visits, but of those with cancelled visits, 78.6 % had their appointments rescheduled as a telehealth visit. Conclusion: Our cohort of PLWE experienced some challenges during the COVID-19 pandemic including poorer mental health and financial and employment-related stressors. Encouragingly, healthcare access was relatively spared during the COVID-19 crisis, with some patients even reporting a reduction in seizure burden. However, PLWE require ongoing psychosocial support with particular attention to decompensation of mental health and social stressors that may be exacerbated by the COVID-19 pandemic.

Original language	English (US)
Article number	109617
Journal	Epilepsy and Behavior
Volume	151
DOIs	https://doi.org/10.1016/j.yebeh.2023.109617
State	Published - Feb 2024

Funding

LM: literature review, drafting and revision of manuscript for content. BM: study concept and design, acquisition of data, drafting and revision of manuscript for content. GVH and PA: analysis and interpretation of data, manuscript revision and content. EG: literature review and manuscript revision for content. JG and ES: manuscript revision and content. CSK, AS, MF, LM, JYY, LJB, KG and AN: study design and concept, revision of manuscript for content. NJ is the Icahn School of Medicine Bludhorn Professor of International Medicine, contributed to study concept and design, acquisition of data, drafting and revision of manuscript for content. Nathalie Jette has received grant funding paid to her institution from NINDS (NIH U24NS107201, NIH IU54NS100064, NIH U24NS113849), the American Epilepsy Society and the NORSE Institute during the study period. She receives an honorarium for her work as an Associate Editor of Epilepsia. LJB has received research support from the American Epilepsy Society, Epilepsy Foundation, NORSE Institute and the Icahn School of Medicine Department of Neurology. PA receives grant funding paid to her institution for grants unrelated to this work from NIH HD100544, NIH PD22-01299 and SU2C 6209. She receives an honorarium for her work as an Assistant Editor of Statistics of Anesthesia & Analgesia.

Keywords

Coronavirus
Depression
Employment
Health services
Seizures

ASJC Scopus subject areas

Neurology
Clinical Neurology
Behavioral Neuroscience

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1016/j.yebeh.2023.109617

Cite this

Mc Carthy, L., Mathew, B., Blank, L. J., Van Hyfte, G., Gotlieb, E., Goldstein, J., Agarwal, P., Kwon, C. S., Singh, A., Fields, M., Marcuse, L., Yoo, J. Y., Sivarak, E., Gururangan, K., Navis, A., & Jetté, N. (2024). Health care access, psychosocial outcomes and mental health in adults living with epilepsy during the COVID-19 pandemic. Epilepsy and Behavior, 151, Article 109617. https://doi.org/10.1016/j.yebeh.2023.109617

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title = "Health care access, psychosocial outcomes and mental health in adults living with epilepsy during the COVID-19 pandemic",

abstract = "Purpose: People living with epilepsy (PLWE) have a higher prevalence of mental health comorbidities and poorer psychosocial outcomes compared to the general population. The aim of this study was to examine psychosocial outcomes, mental health, healthcare accessibility, and seizure burden in PLWE during the COVID-19 pandemic. Methods: We conducted a cross-sectional study of adults with epilepsy treated in an urban multicenter health system from 2021 to 2022. A standardized questionnaire assessed for COVID-19 history, comorbidities, access to antiseizure medications (ASMs) and neurological care, seizure burden, and psychosocial outcomes (e.g., employment, social and financial support). The Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) were administered to evaluate for depression and anxiety. Frequency and proportions for categorical variables and median and interquartile ranges for continuous variables were calculated. Results: Fifty-five PLWE participated (95 % response rate). Median age was 40 years (IQR 31.5–66.5), 61.8 % were women, 47.3 % had a bachelor's degree or higher and 29.1 % each had Medicaid and Medicare insurance. Race (from highest to lowest %) was: 32.7 % White, 20 % Black, 20 % Latinx, 14.5 % Asian, and 12.7 % selected “other” or “prefer not to say.” COVID-19 had been diagnosed in 21.8 % of participants. Symptoms of anxiety and depression were self-reported by 43.6 % and 34.5 % of patients, respectively, with many describing this symptom as new post-pandemic (37.5 % and 31.6 %, respectively). Using validated scales, 52.7 % had depression (PHQ-9 score ≥ 5) with 30.9 % having moderate/severe depression (PHQ-9 score ≥ 10), while 29.1 % had probable generalized anxiety disorder (GAD-7 score ≥ 8). Seizure burden increased in 21.8 % of participants, while 20 % reported fewer seizures and 29.1 % were seizure free since the COVID-19 pandemic. Economic impacts of the pandemic included job loss (25 % amongst those employed at onset of pandemic), new or worsened financial difficulties (40 %), and new or worsened social support issues (30.9 %). Of all participants, 18.2 % reported difficulties accessing ASMs and 25.5 % cancelled visits, but of those with cancelled visits, 78.6 % had their appointments rescheduled as a telehealth visit. Conclusion: Our cohort of PLWE experienced some challenges during the COVID-19 pandemic including poorer mental health and financial and employment-related stressors. Encouragingly, healthcare access was relatively spared during the COVID-19 crisis, with some patients even reporting a reduction in seizure burden. However, PLWE require ongoing psychosocial support with particular attention to decompensation of mental health and social stressors that may be exacerbated by the COVID-19 pandemic.",

keywords = "Coronavirus, Depression, Employment, Health services, Seizures",

author = "{Mc Carthy}, L. and B. Mathew and Blank, {L. J.} and {Van Hyfte}, G. and E. Gotlieb and J. Goldstein and P. Agarwal and Kwon, {C. S.} and A. Singh and M. Fields and L. Marcuse and Yoo, {J. Y.} and E. Sivarak and K. Gururangan and A. Navis and N. Jett{\'e}",

note = "Publisher Copyright: {\textcopyright} 2023 Elsevier Inc.",

year = "2024",

month = feb,

doi = "10.1016/j.yebeh.2023.109617",

language = "English (US)",

volume = "151",

journal = "Epilepsy and Behavior",

issn = "1525-5050",

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Mc Carthy, L, Mathew, B, Blank, LJ, Van Hyfte, G, Gotlieb, E, Goldstein, J, Agarwal, P, Kwon, CS, Singh, A, Fields, M, Marcuse, L, Yoo, JY, Sivarak, E, Gururangan, K, Navis, A & Jetté, N 2024, 'Health care access, psychosocial outcomes and mental health in adults living with epilepsy during the COVID-19 pandemic', Epilepsy and Behavior, vol. 151, 109617. https://doi.org/10.1016/j.yebeh.2023.109617

TY - JOUR

T1 - Health care access, psychosocial outcomes and mental health in adults living with epilepsy during the COVID-19 pandemic

AU - Mc Carthy, L.

AU - Mathew, B.

AU - Blank, L. J.

AU - Van Hyfte, G.

AU - Gotlieb, E.

AU - Goldstein, J.

AU - Agarwal, P.

AU - Kwon, C. S.

AU - Singh, A.

AU - Fields, M.

AU - Marcuse, L.

AU - Yoo, J. Y.

AU - Sivarak, E.

AU - Gururangan, K.

AU - Navis, A.

AU - Jetté, N.

PY - 2024/2

Y1 - 2024/2

N2 - Purpose: People living with epilepsy (PLWE) have a higher prevalence of mental health comorbidities and poorer psychosocial outcomes compared to the general population. The aim of this study was to examine psychosocial outcomes, mental health, healthcare accessibility, and seizure burden in PLWE during the COVID-19 pandemic. Methods: We conducted a cross-sectional study of adults with epilepsy treated in an urban multicenter health system from 2021 to 2022. A standardized questionnaire assessed for COVID-19 history, comorbidities, access to antiseizure medications (ASMs) and neurological care, seizure burden, and psychosocial outcomes (e.g., employment, social and financial support). The Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) were administered to evaluate for depression and anxiety. Frequency and proportions for categorical variables and median and interquartile ranges for continuous variables were calculated. Results: Fifty-five PLWE participated (95 % response rate). Median age was 40 years (IQR 31.5–66.5), 61.8 % were women, 47.3 % had a bachelor's degree or higher and 29.1 % each had Medicaid and Medicare insurance. Race (from highest to lowest %) was: 32.7 % White, 20 % Black, 20 % Latinx, 14.5 % Asian, and 12.7 % selected “other” or “prefer not to say.” COVID-19 had been diagnosed in 21.8 % of participants. Symptoms of anxiety and depression were self-reported by 43.6 % and 34.5 % of patients, respectively, with many describing this symptom as new post-pandemic (37.5 % and 31.6 %, respectively). Using validated scales, 52.7 % had depression (PHQ-9 score ≥ 5) with 30.9 % having moderate/severe depression (PHQ-9 score ≥ 10), while 29.1 % had probable generalized anxiety disorder (GAD-7 score ≥ 8). Seizure burden increased in 21.8 % of participants, while 20 % reported fewer seizures and 29.1 % were seizure free since the COVID-19 pandemic. Economic impacts of the pandemic included job loss (25 % amongst those employed at onset of pandemic), new or worsened financial difficulties (40 %), and new or worsened social support issues (30.9 %). Of all participants, 18.2 % reported difficulties accessing ASMs and 25.5 % cancelled visits, but of those with cancelled visits, 78.6 % had their appointments rescheduled as a telehealth visit. Conclusion: Our cohort of PLWE experienced some challenges during the COVID-19 pandemic including poorer mental health and financial and employment-related stressors. Encouragingly, healthcare access was relatively spared during the COVID-19 crisis, with some patients even reporting a reduction in seizure burden. However, PLWE require ongoing psychosocial support with particular attention to decompensation of mental health and social stressors that may be exacerbated by the COVID-19 pandemic.

AB - Purpose: People living with epilepsy (PLWE) have a higher prevalence of mental health comorbidities and poorer psychosocial outcomes compared to the general population. The aim of this study was to examine psychosocial outcomes, mental health, healthcare accessibility, and seizure burden in PLWE during the COVID-19 pandemic. Methods: We conducted a cross-sectional study of adults with epilepsy treated in an urban multicenter health system from 2021 to 2022. A standardized questionnaire assessed for COVID-19 history, comorbidities, access to antiseizure medications (ASMs) and neurological care, seizure burden, and psychosocial outcomes (e.g., employment, social and financial support). The Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) were administered to evaluate for depression and anxiety. Frequency and proportions for categorical variables and median and interquartile ranges for continuous variables were calculated. Results: Fifty-five PLWE participated (95 % response rate). Median age was 40 years (IQR 31.5–66.5), 61.8 % were women, 47.3 % had a bachelor's degree or higher and 29.1 % each had Medicaid and Medicare insurance. Race (from highest to lowest %) was: 32.7 % White, 20 % Black, 20 % Latinx, 14.5 % Asian, and 12.7 % selected “other” or “prefer not to say.” COVID-19 had been diagnosed in 21.8 % of participants. Symptoms of anxiety and depression were self-reported by 43.6 % and 34.5 % of patients, respectively, with many describing this symptom as new post-pandemic (37.5 % and 31.6 %, respectively). Using validated scales, 52.7 % had depression (PHQ-9 score ≥ 5) with 30.9 % having moderate/severe depression (PHQ-9 score ≥ 10), while 29.1 % had probable generalized anxiety disorder (GAD-7 score ≥ 8). Seizure burden increased in 21.8 % of participants, while 20 % reported fewer seizures and 29.1 % were seizure free since the COVID-19 pandemic. Economic impacts of the pandemic included job loss (25 % amongst those employed at onset of pandemic), new or worsened financial difficulties (40 %), and new or worsened social support issues (30.9 %). Of all participants, 18.2 % reported difficulties accessing ASMs and 25.5 % cancelled visits, but of those with cancelled visits, 78.6 % had their appointments rescheduled as a telehealth visit. Conclusion: Our cohort of PLWE experienced some challenges during the COVID-19 pandemic including poorer mental health and financial and employment-related stressors. Encouragingly, healthcare access was relatively spared during the COVID-19 crisis, with some patients even reporting a reduction in seizure burden. However, PLWE require ongoing psychosocial support with particular attention to decompensation of mental health and social stressors that may be exacerbated by the COVID-19 pandemic.

KW - Coronavirus

KW - Depression

KW - Employment

KW - Health services

KW - Seizures

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DO - 10.1016/j.yebeh.2023.109617

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SN - 1525-5050

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M1 - 109617

ER -

Health care access, psychosocial outcomes and mental health in adults living with epilepsy during the COVID-19 pandemic

Abstract

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Keywords

ASJC Scopus subject areas

UN SDGs

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