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: SCN1A, CDKL5, STXBP1, KCNQ2, PCDH19, 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.
by Marialuisa Zedde and Francesco Cavallieri