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

Abstract

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.

Impact of COVID-19 pandemic on physical and mental health status and care of adults with epilepsy in Germany

“…Because of the low incidence of COVID-19 in our cohort during the first wave of the pandemic, we were unable to draw reliable conclusions on this. Fear of experiencing more severe COVID-19 disease due to epilepsy was reported by 74.5% of PWE in Brazil, while dissatisfaction with current health status was reported by 36.7%, but related to the second pandemic wave in autumn 2020 [ 32 ]. In addition, fear of belonging to an “at-risk” group may contribute to increased psychological distress during the first wave of the pandemic.…”

COVID-19 prevalence and mortality in people with epilepsy: A nation-wide multicenter study

“…Therefore, in our population there are probably more cases of COVID-19 than diagnosed. Previous studies highlighted that PWE had limited access to health services or medication during pandemic period and that no testing was performed in most PWE who reported symptoms compatible with COVID-19 [2] , [3] , [4] , [5] , [10] , [14] , [27] , [28] , [29] , making unlikely that the higher prevalence of COVID-19 in PWE was due to an easier access to health care resources of these patients during the pandemic because of their condition.…”

Experiences of adult epilepsy patients with COVID-19 infections and vaccinations

“…Several other aspects of the impact of the pandemic on PWE have been addressed by other researchers and were not within the scope of our study: Seizure increases during the COVID-19 pandemic have been reported independently of infections [ 7 , 22 ]. A seizure increase during the pandemic was partly explained by several problems beyond the infection itself such as dispensing of antiseizure medication (ASM), telehealth, and access to the healthcare system in general, at least in developing countries [ 9 ]. Finally, results concerning the pandemic and new-onset seizures and epilepsies were inconsistent [ 1 , 6 , 8 , 12 – 14 , 17 ].…”