Recalling the COVID-19 lockdown: Insights from patients with epilepsy

PURPOSE: The purpose of our study was to explore health changes among people with epilepsy (PWE) during a national COVID-19 lockdown in the context of patients’ clinical characteristics and their experience of receiving epilepsy-related medical services. METHODS: A questionnaire was distributed for adult PWE both online and at a tertiary epilepsy center after the end of a national lockdown in Lithuania. PWE were asked to evaluate their health status during the lockdown and estimate changes in their seizure patterns. Additional questions concerned the accessibility and quality of epilepsy-related consultations. RESULTS: The study sample consisted of 143 PWE (59 [41.3%] male, mean age 35.1 ± 13.4 years), 94 (65.7%) completed the survey in person, 49 (34.3%) – online. A deterioration in reported physical and mental health during lockdown was observed (Z = −4.604, p < 0.0001 and Z = −4.253, p < 0.0001, respectively) and 22 (15.4%) PWE reported seizure exacerbation. In an ordinal logistic regression model (analysis of data from all participants), baseline seizure frequency (b = 0.413, p = 0.031), reported physical health before lockdown (b = −0.462, p = 0.031) and the ease of proper antiepileptic drug (AED) use during the imposed restrictions (b = −0.535, p = 0.006) were statistically significant variables associated with changes in seizure frequency. The latter were not affected by modifications in AED use (Mann–Whitney U = 1127.0, p = 0.307) irrespective of the data collection method. With teleconsultations being predominant during the lockdown, an overall decline in the quality of epilepsy-related consultations was observed (Z = −2.895, p = 0.004). Among all participants, 46 (32.2%) lost an epilepsy-related consultation or medical service because of the lockdown. This loss was found to be associated with seizure exacerbation (Mann–Whitney U = 1622.5, p = 0.046). CONCLUSION: Our study indicates that a national COVID-19 lockdown may have led to worse seizure control and health status in some PWE. Easy access to AEDs and their appropriate use may be especially useful to prevent seizure exacerbation during strict COVID-19 restrictions. The quality and accessibility of remote epilepsy-related consultations was suboptimal and may require further improvement during disruption of in-person services.