Responses of people with epilepsy to the COVID-19 pandemic in the time of national lockdown

Friedrich, Latica; Sruk, Ana; Bielen, Ivan

doi:10.1016/j.yebeh.2021.107790

Cited by 6 publications

(2 citation statements)

References 17 publications

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“…Also, the fear of contracting COVID-19 was higher in females, people with low schooling and financial restrictions besides those who presented difficulties in getting ASM in public dispensing units and with more severe epilepsy. The same findings were reported by other authors [37]. The misconceptions that epilepsy and ASM are associated with an increased risk of having COVID-19 reveal a window of opportunity for patient associations to offer scientific information for promoting quality of life as well stigma reduction in PWE.…”

Section: Discussionsupporting

confidence: 86%

COVID-19 and epilepsy: How are people with epilepsy in Brazil?

Guilhoto

Mosini

Susemihl³

et al. 2021

Epilepsy & Behavior

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During COVID-19 pandemic the global population is facing an important psychosocial distress. The aim of this study was to evaluate how people with epilepsy (PWE) in Brazil is dealing with the pandemic, in relation to seizure frequency, access to antiseizure medicines (ASM), medical follow-up, and well-being. Methods: An online questionnaire survey among PWE (group 1) and caregivers (group 2) was applied in the social networks of the Brazilian Association of Epilepsy, the official Brazilian chapter of the International Bureau for Epilepsy. The questionnaire was composed of 46 generic questions in four areas, namely, demographics and baseline clinical data as well as epilepsy and quality-of-life impact by COVID-19 pandemic based on the domains of the abbreviated World Health Organization Quality of Life (WHOQOL-BREF) instrument. Results: The questionnaire was answered by 464 participants including 380 (81.9%) PWE (78.7% female; age 34.3 yrs.; ±9.76) and 84 (18.1%) caregivers (patients' age 14.1 yrs.; ±10.30). During the COVID-19 pandemic, 36.8% of PWE and 36.4% of caregivers reported difficulties in accessing the epilepsy healthcare provider, and visits occurred normally only in 29.7% of PWE and in 34.5% of the caregiveŕs group. Telehealth was not provided for 66.6% of group 1 and for 58.5% of group 2. Lack of availability of ASM was reported by 21.9% of PWE and 28.0% of caregivers in public dispensing units and by 19.2% and 17.8%, respectively, in private pharmacies. Increase in seizures during pandemic was mentioned by 26.3% and 27.9% of groups 1 and 2, respectively. Patients who had increase in seizure frequency had more frequently reported problems with treatment and in quality-of-life concepts. Fear of having a more severe COVID-19 presentation because of epilepsy was reported by 74.5% of PWE and by 89.8% of caregivers. Dissatisfaction with current health status was reported by 36.7% and 38.1% in groups 1 and 2, respectively, and that the support from others has decreased (56.1% and 66.1%, in groups 1 and 2) during the pandemic. The factors with higher Odds Ratio of increase in seizure frequency during pandemic were age >41 yrs., treatment in public healthcare system, drug-resistant epilepsy, adversities in getting ASM in public dispensing units, difficulties with prescription renewals, current financial problems and belief that epilepsy or ASM are risk factors for contracting COVID-19. Conclusion: During COVID-19 pandemic in Brazil, PWE and caregivers reported increase in seizures in one-fourth of the patients and several difficulties, namely problems in accessing the healthcare system including ASM dispensation, telehealth, and fear of having a more severe COVID-19 because of epilepsy. There were also physical, psychological, and social concerns which affected quality-of-life-related aspects in this population. These facts may increase treatment gap in epilepsy in Brazil as well in other developing countries.

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Section: Discussionsupporting

confidence: 86%

COVID-19 and epilepsy: How are people with epilepsy in Brazil?

Guilhoto

Mosini

Susemihl³

et al. 2021

Epilepsy & Behavior

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“…This encouraged care providers to implement further action, monitor these challenges, and develop an action plan that ensures adequate care [6] , [16] , [17] , [18] , [19] . Some conditions are considerably affected by various aspects; for example, anxiety, depression, sleep disturbances, and seizures are increased in patients with epilepsy (PWE) [20] , [21] , [22] , [23] . Epilepsy surgery was therefore also impacted by this health crisis [24] , as many PWE feared contracting the infection and thus avoided attending hospital procedures.…”

Section: Discussionmentioning

confidence: 99%

The safety and efficacy of modifying the admission protocol to the epilepsy monitoring unit in response to the COVID-19 pandemic

Babtain

Atteyah

Milyani

et al. 2021

Epilepsy & Behavior

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Purpose The coronavirus disease 2019 (COVID-19) pandemic has impacted admission to epilepsy monitoring units (EMUs) for classification and presurgical evaluation of patients with refractory epilepsy. We modified the EMU admission protocol via anti-seizure medications (ASM) withdrawal implemented one day before admission; thus, we aimed to evaluate the efficacy and safety of this modified protocol. Methods In January 2021, we initiated ASM tapering 24 hours before—rather than on the first day after—EMU admission, contrasting with the previous protocol. We retrospectively reviewed EMU admissions between January and April of 2018, 2019, and 2021, and identified the time required to record the first seizure, and EMU yield to confirm or change the epilepsy classification. We also evaluated the safety of the modified protocol, by monitoring the seizure frequency for up to 5 months after the discharge from the hospital. Results One hundred four patients were included (mean age: 30 years, men: 43%); excluding a longer disease duration and abundance of normal routine electro-encephalogram (EEG) in patients admitted before the pandemic, no differences were observed in patients' characteristics. On average, it took 41 hours and 21 hours to record the first seizure using the standard and modified protocols, respectively (p<0.001, 95% CI: 10–30). Other characteristics were investigated both before and after the COVID-19 pandemic, and epilepsy classifications were confirmed twice using the modified protocol (OR=2.4, p=0.04, 95% CI: 1.1–5.5). Multivariate regression analysis confirmed the shorter time to record the first seizure using the modified admission protocol (23 hours less, p<0.001; 95% CI: 12–34). Finally, 36 (86 %) patients admitted during the pandemic exhibited no increase in seizure frequency after the discharge from the hospital. Conclusions Initiating ASM withdrawal one day before EMU admission was deemed to be an efficient and safe way to confirm epilepsy classification and significantly decrease the length of hospital stay. Ultimately, this will shorten the long waiting list for EMU admission created by the COVID-19 pandemic.

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The impact of COVID‐19 on people with epilepsy: Global results from the coronavirus and epilepsy study

Vasey,

Tai,

Thorpe

et al. 2024

Epilepsia Open

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ObjectiveTo characterize the experience of people with epilepsy and aligned healthcare workers (HCWs) during the first 18 months of the COVID‐19 pandemic and compare experiences in high‐income countries (HICs) with non‐HICs.MethodsSeparate surveys for people with epilepsy and HCWs were distributed online in April 2020. Responses were collected to September 2021. Data were collected for COVID‐19 infections, the effect of COVID‐related restrictions, access to specialist help for epilepsy (people with epilepsy), and the impact of the pandemic on work productivity (HCWs). The frequency of responses for non‐HICs and HICs were compared using non‐parametric Chi‐square tests.ResultsTwo thousand one hundred and five individuals with epilepsy from 53 countries and 392 HCWs from 26 countries provided data. The same proportion of people with epilepsy in non‐HICs and HICs reported COVID‐19 infection (7%). Those in HICs were more likely to report that COVID‐19 measures had affected their health (32% vs. 23%; p < 0.001). There was no difference between non‐HICs and HICs in the proportion who reported difficulty in obtaining help for epilepsy. HCWs in non‐HICs were more likely to report COVID‐19 infection than those in HICs (18% vs 6%; p = 0.001) and that their clinical work had been affected by concerns about contracting COVID‐19, lack of personal protective equipment, and the impact of the pandemic on mental health (all p < 0.001). Compared to pre‐pandemic practices, there was a significant shift to remote consultations in both non‐HICs and HICs (p < 0.001).SignificanceWhile the frequency of COVID‐19 infection was relatively low in these data from early in the pandemic, our findings suggest broader health consequences and an increased psychosocial burden, particularly among HCWs in non‐HICs. Planning for future pandemics should prioritize mental healthcare alongside ensuring access to essential epilepsy services and expanding and enhancing access to remote consultations.Plain Language SummaryWe asked people with epilepsy about the effects of COVID‐19 on their health and healthcare. We wanted to compare responses from people in high‐income countries and other countries. We found that people in high‐income countries and other countries had similar levels of difficulty in getting help for their epilepsy. People in high‐income countries were more likely to say that their general health had been affected. Healthcare workers in non‐high‐income settings were more likely to have contracted COVID‐19 and have the care they deliver affected by the pandemic. Across all settings, COVID‐19 associated with a large shift to remote consultations.

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Responses of people with epilepsy to the COVID-19 pandemic in the time of national lockdown

Cited by 6 publications

References 17 publications

COVID-19 and epilepsy: How are people with epilepsy in Brazil?

COVID-19 and epilepsy: How are people with epilepsy in Brazil?

The safety and efficacy of modifying the admission protocol to the epilepsy monitoring unit in response to the COVID-19 pandemic

The impact of COVID‐19 on people with epilepsy: Global results from the coronavirus and epilepsy study

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