Impact of COVID-19 on Spanish patients with Dravet syndrome and their caregivers: consequences of lockdown

Introduction. The COVID-19 pandemic caused a state of alarm in Spain in March 2020. The necessary approach to the care of patients with Dravet syndrome (DS) makes them and their caregivers a vulnerable group in emergency situations. Objectives. To explore the impact of the COVID-19 pandemic on the management and condition of Spanish patients with DS and their caregivers and families. Materials and methods. Analysis of data belonging to Spanish families taken from a European online survey (14 April-17 May 2020). It included data on DS patients, on the disease and on caregivers before and after lockdown during the state of alarm. Results. Sixty-nine Spanish families participated; average age of patients: 12.6 years. Except in 19% of the cases that were isolated, protective/isolation measures for patients were followed without increasing. Epilepsy remained stable, with no medication or resource/personnel availability issues. Sleep-wake pattern (61%) and behavior (41%) of patients changed. Behavior change was associated with seizures during lockdown and with caregiver emotional state (changes in 76%). Psychological support was offered to only 9% of caregivers. Thirty-eight per cent of patients did not receive remote care. Conclusions. The experience gathered during the lockdown has allowed the detection of points of improvement to ensure the proper management of DS and to keep the situation of patients and caregivers stable. All of this with a prominent role of telemedicine.

Automated summary

The study explored the impact of the COVID-19 pandemic on Spanish patients with Dravet syndrome (DS) and their families. Results showed changes in sleep-wake patterns and behavior of patients during lockdown, with many caregivers experiencing emotional changes. Despite receiving remote care, some patients and caregivers did not receive psychological support.