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

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. Va...

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Autores principales: Clayton, Lisa M., Balestrini, Simona, Cross, J. Helen, Wilson, Galia, Eldred, Claire, Evans, Helen, Koepp, Matthias J., Sisodiya, Sanjay M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier Inc. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8379095/
https://www.ncbi.nlm.nih.gov/pubmed/34536735
http://dx.doi.org/10.1016/j.yebeh.2021.108258
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author Clayton, Lisa M.
Balestrini, Simona
Cross, J. Helen
Wilson, Galia
Eldred, Claire
Evans, Helen
Koepp, Matthias J.
Sisodiya, Sanjay M.
author_facet Clayton, Lisa M.
Balestrini, Simona
Cross, J. Helen
Wilson, Galia
Eldred, Claire
Evans, Helen
Koepp, Matthias J.
Sisodiya, Sanjay M.
author_sort Clayton, Lisa M.
collection PubMed
description 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.
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spelling pubmed-83790952021-08-23 The impact of SARS-CoV-2 vaccination in Dravet syndrome: A UK survey Clayton, Lisa M. Balestrini, Simona Cross, J. Helen Wilson, Galia Eldred, Claire Evans, Helen Koepp, Matthias J. Sisodiya, Sanjay M. Epilepsy Behav Article 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. Elsevier Inc. 2021-11 2021-08-21 /pmc/articles/PMC8379095/ /pubmed/34536735 http://dx.doi.org/10.1016/j.yebeh.2021.108258 Text en © 2021 Elsevier Inc. All rights reserved. Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.
spellingShingle Article
Clayton, Lisa M.
Balestrini, Simona
Cross, J. Helen
Wilson, Galia
Eldred, Claire
Evans, Helen
Koepp, Matthias J.
Sisodiya, Sanjay M.
The impact of SARS-CoV-2 vaccination in Dravet syndrome: A UK survey
title The impact of SARS-CoV-2 vaccination in Dravet syndrome: A UK survey
title_full The impact of SARS-CoV-2 vaccination in Dravet syndrome: A UK survey
title_fullStr The impact of SARS-CoV-2 vaccination in Dravet syndrome: A UK survey
title_full_unstemmed The impact of SARS-CoV-2 vaccination in Dravet syndrome: A UK survey
title_short The impact of SARS-CoV-2 vaccination in Dravet syndrome: A UK survey
title_sort impact of sars-cov-2 vaccination in dravet syndrome: a uk survey
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8379095/
https://www.ncbi.nlm.nih.gov/pubmed/34536735
http://dx.doi.org/10.1016/j.yebeh.2021.108258
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