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

Abstract

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.