Genetic epilepsies and COVID‐19 pandemic: Lessons from the caregiver perspective

Abstract

The COVID-19 pandemic represents an unprecedented international crisis with significant health, economic, and social consequences. This scenario has forced the medical community to face new practical and ethical challenges that require rapid responses. Early data show a variety of neurological manifestations in a significant proportion of patients with SARS-CoV-2 infection, 1,2 although there is little documentation of the effects on people with epilepsy. 2,3 In this study, we assess the impact of the COVID-19 pandemic in a particularly vulnerable population: individuals with genetic developmental and epileptic encephalopathies (DEEs) and their caregivers. Although children appear to present milder COVID-19 manifestations, 4 patients with DEEs present an increased susceptibility to certain triggers related to viral infections and respiratory comorbidities, are at risk of missing medical follow-up and emergency assistance due to health care resource allocation focus on COVID-19 patients, and are exposed to broader sociopsychological impact related to lockdown. Therefore, this study evaluates the impact of the pandemic on patients with genetic DEEs and their caregivers in Spain, one of the current hotspots of the pandemic.This study was a cross-sectional survey open between April 7 and April 11, 2020, 23-27 days after national lockdown was established in Spain. Participants were caregivers of DEE patients with proven or suspected genetic origin, recruited through patient advocacy groups, using internet-based sources. They were asked to fill out a structured questionnaire. Informed written consent was obtained from each caregiver. This methodology, previously used for Dravet syndrome and other neurodevelopmental diseases, 5 permits collecting larger samples for rare conditions. Statistical analysis was performed with R v3.6.2.A total of 277 responses from caregivers were collected, covering several different conditions. The most frequent genetic diagnoses were as follows: SCN1A, CDKL5, STXBP1, KCNQ2, PCDH19, and SYNGAP1 (see Table 1). DEEs of suspected genetic origin with negative genetic findings were reported by 36.8%. Mean age was 12.4 years; 58.1% were female. Fifteen patients (5.5%) were reported to present typical LETTER

Shifting Developmental Trajectories During Critical Periods of Brain Formation

“…Are the potential long-term consequences of confinement in children with neurodevelopmental disorders—such as ASD—exceeding the risk of COVID19 infection? (Aledo-Serrano et al, 2020 ). A better understanding of critical periods as opposed to sensitive periods is fundamental to instruct these policies, considering the implications for mental health of the next generations.…”

Influence of the COVID-19 outbreak in people with epilepsy: Analysis of a Spanish population (EPICOVID registry)

“…Nonetheless, the reason for this seizure exacerbation was not due to COVID-19 infections but rather to other factors that emerged during the pandemic. In studies conducted by Aledo-Serrano et al [ 8 ] and Lai et al [ 6 ], around 15% of the patients saw their seizure control worsen. In the study of Lai et al [ 6 ] during the SARS epidemic, an important proportion of patients missed follow-up with their medical provider and did not receive medication, which was the main factor for seizure exacerbation.…”

“…In all cases, p values less than 0.05 were considered as statistically significant. The size of the sample was calculated based on an expected variation of seizure frequency in 10–25% of the patients included, as observed in previous studies [ [6] , [7] , [8] ]. Assuming a percentage of data loses of 10%, our sample should be at least of 90 PWE.…”

“…Some studies have evaluated the status of PWE during previous epidemic outbreaks [ 6 ] and other natural catastrophes [ 7 ], finding a worsening of seizure control in an important proportion of this group. A recent study analyzed the impact of the current COVID-19 pandemic in patients with genetic encephalopathies and their caregivers, finding a worsening of seizure control in 14% of the patients during the lockdown period [ 8 ]. Despite it not being a representative sample of the population with epilepsy, it evidences the challenge that the current sociosanitary crisis generates for PWE.…”

Management of West syndrome during COVID-19 pandemic: A viewpoint from South Asian West Syndrome Research Group

“…Acute symptomatic seizures or worsening epilepsy control in children with epilepsy is uncommon and infrequently reported with COVID-19 ( Lu et al, 2020 ; Aledo-Serrano et al, 2020 ). Besides, acute febrile illnesses and pyretotherapy (artificial fever therapy) have been associated with spontaneous remission of epileptic spasms and resolution of hypsarrhythmia in children with WS ( Garcia de Alba et al, 1984 ; Sugiura et al, 2007 ).…”