Genetic epilepsies and COVID-19 pandemic: lessons from the caregiver perspective

In this paper recently published in Epilepsia, Aledo-Serrano et al. evaluated the impact of the pandemic on patients with genetic, developmental and epileptic encephalopathies (DEEs) and their caregivers in Spain.

In this paper recently published in Epilepsia, Aledo-Serrano et al. evaluated the impact of the pandemic on patients with genetic, developmental and epileptic encephalopathies (DEEs) and their caregivers in Spain. In the cross-sectional survey, which opened between April 7 and April 11 2020, participants were caregivers of DEE patients with a proven or suspected genetic origin, recruited through patient advocacy groups, using internet-based sources. They were asked to fill out a structured questionnaire. A total of 277 responses from caregivers were collected, covering several different conditions. The most frequent genetic diagnoses were as follows: SCN1ACDKL5STXBP1KCNQ2PCDH19, and SYNGAP1. Overall, 39 (14.1%) and 87 (30.3%) cases reported either an increase in seizure frequency or behavioral deterioration during the lockdown, respectively. The authors concluded that, although more research is needed and the cross-sectional study design has limitations, patients with DEEs and their caregivers face multiple challenges during the COVID-19 pandemic that might lead to worse seizure control and adverse psychological outcomes in this population. These could be related to a direct impact of the COVID-19 infection and lockdown conditions, and indirectly to health system barriers (so-called “secondary harm”) and sociopsychological and economic burdens on caregivers.

https://onlinelibrary.wiley.com/doi/10.1111/epi.16537

by Marialuisa Zedde and Francesco Cavallieri