Impact of the COVID-19 pandemic on people with epilepsy: Findings from the Brazilian arm of the COV-E study

Abstract

The COVID-19 pandemic has had an unprecedented impact on people and healthcare services. The disruption to chronic illnesses, such as epilepsy, may relate to several factors ranging from direct infection to secondary effects from healthcare reorganization and social distancing measures. Objectives As part of the COVID-19 and Epilepsy (COV-E) global study, we ascertained the effects of COVID-19 on people with epilepsy in Brazil, based on their perspectives and those of their caregivers. We also evaluated the impact of COVID-19 on the care delivered to people with epilepsy by healthcare workers. Methods We designed separate online surveys for people with epilepsy and their caregivers. A further survey for healthcare workers contained additional assessments of changes to working patterns, productivity, and concerns for those with epilepsy under their care. The Brazilian arm of COV-E initially collected data from May to November 2020 during the country's first wave. We also examined national data to identify the Brazilian states with the highest COVID-19 incidence and related mortality. Lastly, we applied this geographic grouping to our data to explore whether local disease burden played a direct role in difficulties faced by people with epilepsy. Results Two hundred and forty-one people returned the survey, 20% were individuals with epilepsy ( n = 48); 22% were caregivers ( n = 53), and 58% were healthcare workers ( n = 140). Just under half (43%) of people with epilepsy reported health changes during the pandemic, including worsening seizure control, with specific issues related to stress and impaired mental health. Of respondents prescribed antiseizure medication, 11% reported difficulty taking medication on time due to problems acquiring prescriptions and delayed or canceled medical appointments. Only a small proportion of respondents reported discussing significant epilepsy-related risks in the previous 12 months. Analysis of national COVID-19 data showed a higher disease burden in the states of Sao Paulo and Rio de Janeiro compared to Brazil as a whole. There were, however, no geographic differences observed in survey responses despite variability in the incidence of COVID-19. Conclusion Our findings suggest that Brazilians with epilepsy have been adversely affected by COVID-19 by factors beyond infection or mortality. Mental health issues and the importance of optimal communication are critical during these difficult times. Healthcare services need to find nuanced approaches and learn from shared international experiences to provide optimal care for people with epilepsy as the direct burden of COVID-19 improves in some countries. In contrast, others face resurgent waves of the pandemic.

Impact of theCOVID‐19 pandemic on people with epilepsy: Findings from theUSarm of theCOV‐Estudy

“…These findings are further supported by a recent study that reported that 57.1% of PWE and 21.5% of caregivers endorsed significant psychological distress 23 . Deterioration of mood and increased emotional distress in people with epilepsy during the pandemic has also been observed in the UK and Brazilian arms of this study, 16,17 as well as multiple others 1,14,15,18 …”

“… 12 People with epilepsy have experienced worsening of seizures, greater emotional distress, and sleep disruption during this pandemic. 13 , 14 , 15 , 16 , 17 , 18 This reported emotional distress and sleep disruption was similar to the general population, with numbers reported as high as 30% of people citing sleep disturbances, and 71% reporting emotional distress. 19 A recent meta‐analysis has suggested that people with epilepsy may be at greater risk of poorer COVID‐19 outcomes, particularly disease severity and mortality.…”

“…An estimated 1.2% of the US population, approximately 3.4 million people, has epilepsy 12 . People with epilepsy have experienced worsening of seizures, greater emotional distress, and sleep disruption during this pandemic 13–18 . This reported emotional distress and sleep disruption was similar to the general population, with numbers reported as high as 30% of people citing sleep disturbances, and 71% reporting emotional distress 19 .…”

Social Media Efficacy in Crisis Management: Effectiveness of Non-pharmaceutical Interventions to Manage COVID-19 Challenges

“…The World Health Organization, China office reported a new strain of SARS infection (severe acute respiratory syndrome) in Wuhan, China, in late December 2019 (1)(2)(3)(4)(5). Accordingly, health experts recognized this fatal viral disease as SARS-CoV-2 (6)(7)(8).…”

Rehabilitation of Patients With Epilepsy After a New Coronavirus Infection

“…Проблемы психического здоровья и важность оптимального общения имеют решающее значение в эти трудные времена. Службы здравоохранения должны найти тонкие подходы и извлечь уроки из общего международного опыта для обеспечения оптимального ухода за людьми с эпилепсией[24]. Этот необычный опыт проясняет необходимость создания телемедицинских услуг и домашнего лечения эпилепсии[25], включая амбулаторную ЭЭГ, домашнее видео и доставку лекарств по месту жительства пациентов для оказания непрерывной медицинской помощи[26,27,28].Также стоит отметить, что, согласно данным R. von Wrede, J. Pukropski, S. Moskau-В рамках проекта ВОЗ «Реабилитация и качество жизни больных эпилепсией» было проведено исследование уровня социальной стигматизации PWE.…”