The impact of SARS-CoV-2 vaccination in Dravet syndrome: A UK survey

Lisa M Clayton; Simona Balestrini; J Helen Cross; Galia Wilson; Claire Eldred; Helen Evans; Matthias J Koepp; Sanjay M Sisodiya

doi:10.1016/j.yebeh.2021.108258

The impact of SARS-CoV-2 vaccination in Dravet syndrome: A UK survey

Epilepsy Behav. 2021 Aug 21:124:108258. doi: 10.1016/j.yebeh.2021.108258. Online ahead of print.

Authors

Lisa M Clayton¹, Simona Balestrini², J Helen Cross³, Galia Wilson⁴, Claire Eldred⁵, Helen Evans⁶, Matthias J Koepp⁷, Sanjay M Sisodiya⁸

Affiliations

¹ Department of Clinical and Experimental Epilepsy, UCL Queen Square Institute of Neurology, London WC1N 3BG, UK; Chalfont Centre for Epilepsy, Chalfont St. Peter, Buckinghamshire SL9 0RJ, UK. Electronic address: Lisa.clayton@ucl.ac.uk.
² Department of Clinical and Experimental Epilepsy, UCL Queen Square Institute of Neurology, London WC1N 3BG, UK; Chalfont Centre for Epilepsy, Chalfont St. Peter, Buckinghamshire SL9 0RJ, UK; Neuroscience Department, Meyer Children Hospital, Viale Gaetano Pieraccini, 2450139 Florence, Italy. Electronic address: s.balestrini@ucl.ac.uk.
³ UCL NIHR BRC Great Ormond Street Institute of Child Health, 30 Guilford Street, London WC1N 1EH, UK; Young Epilepsy, Piers Lane, Lingfield RH7 6PW, UK. Electronic address: h.cross@ucl.ac.uk.
⁴ Dravet Syndrome UK (DSUK), Registered Charity Number 1128289, Member of Dravet Syndrome European Federation (DSEF), PO Box 756, Chesterfield S43 9EB, UK. Electronic address: galia.w@dravet.org.uk.
⁵ Dravet Syndrome UK (DSUK), Registered Charity Number 1128289, Member of Dravet Syndrome European Federation (DSEF), PO Box 756, Chesterfield S43 9EB, UK. Electronic address: claire.e@dravet.org.uk.
⁶ Dravet Syndrome UK (DSUK), Registered Charity Number 1128289, Member of Dravet Syndrome European Federation (DSEF), PO Box 756, Chesterfield S43 9EB, UK. Electronic address: helen.e@dravet.org.uk.
⁷ Department of Clinical and Experimental Epilepsy, UCL Queen Square Institute of Neurology, London WC1N 3BG, UK; Chalfont Centre for Epilepsy, Chalfont St. Peter, Buckinghamshire SL9 0RJ, UK. Electronic address: m.koepp@ucl.ac.uk.
⁸ Department of Clinical and Experimental Epilepsy, UCL Queen Square Institute of Neurology, London WC1N 3BG, UK; Chalfont Centre for Epilepsy, Chalfont St. Peter, Buckinghamshire SL9 0RJ, UK. Electronic address: s.sisodiya@ucl.ac.uk.

Abstract

Background: The COVID-19 pandemic led to the urgent need for accelerated vaccine development. Approved vaccines have proved to be safe and well tolerated across millions of people in the general population. Dravet syndrome (DS) is a severe, early onset, developmental and epileptic encephalopathy. Vaccination is a precipitating factor for seizures. While there is no evidence that vaccine-precipitated seizures lead to adverse outcomes in people with DS, fear surrounding vaccination can remain for caregivers of people with DS, in some cases resulting in rejection of recommended vaccinations, leaving individuals more vulnerable to the relevant infections. A greater understanding of the safety profile of the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) vaccination in this vulnerable group will help provide guidance for caregivers and clinicians when considering vaccination.

Methods: A cross-sectional survey regarding COVID-19 and SARS-CoV-2 vaccine, in people with DS, was conducted by Dravet Syndrome UK (DSUK). Concomitantly, a review of individuals with DS who had recently received the SARS-CoV-2 vaccine, and who are resident at the Chalfont Centre for Epilepsy (CCE), or attend epilepsy clinics at the National Hospital for Neurology and Neurosurgery (NHNN), was undertaken.

Results: Thirty-eight people completed the DSUK survey. Thirty-seven percent of caregivers reported being concerned about someone with DS receiving the SARS-CoV-2 vaccine; with some reporting that they would decline a vaccine when offered. Seventy-seven percent had not received any advice from a healthcare professional about the SARS-CoV-2 vaccination. 18/38 were eligible for SARS-CoV-2 vaccination, of whom nine had received their first vaccine dose. Combining the results of the DSUK survey and the review of individuals monitored at CCE or NHNN, fifteen people with DS had received their first dose of the SARS-CoV-2 vaccine. 11/15 (73%) reported at least one side effect, the most common being fatigue (6/15; 40%) and fever (6/15; 40%). Three individuals (20%) reported an increase in seizure frequency after the first vaccine dose. No increase in seizure frequency or duration was reported after the second dose.

Conclusion: Overall, these results suggest that SARS-CoV-2 vaccines are safe and well tolerated in individuals with DS, as they are in most people without DS. In most people with DS, SARS-CoV-2 vaccine does not appear to be associated with an increase in the frequency or duration of seizures, even in those who develop fever post-vaccination. Many caregivers are concerned about a person with DS receiving a SARS-CoV-2 vaccine, with some reporting that they would decline a SARS-CoV-2 vaccine when offered. It is crucial that healthcare professionals are proactive in providing accurate information regarding the risks and benefits of vaccination in this population, given the potential for serious outcomes from infection.

Keywords: COVD-19; Dravet syndrome; SARS-CoV-2; Seizures; Side effects; Vaccination.