DSUK Surveys: Impact of COVID-19 in Dravet Syndrome

In collaboration with Professor Helen Cross and Professor Sanjay Sisodiya and colleagues, DSUK conducted two surveys among families living with Dravet Syndrome (in June-July 2020 and February 2021) to explore the impact of COVID-19. 

The results from these surveys have subsequently been published in peer-review journals. See below for more information and links to the full scientific papers.

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

In February 2021, DSUK conducted a survey to gather information about the SARS-CoV-2 vaccination (coronavirus or COVID-19 vaccination), in people with Dravet Syndrome (DS).  Families of eight people with DS, who had received either the Pfizer/BioNTech or Oxford/AstraZeneca vaccine, responded.  Their ages ranged from 16 – 44 years. The full findings from the survey are published in peer-review medical journal, Epilepsy & Behaviour, and can be viewed online here.

Key findings from the survey include:

• Overall, the results of the survey suggest that the SARS-CoV-2 vaccines are safe and well tolerated in people with DS, as they are in most people without DS. 
• Mild, short term side effects including fatigue, fever, pain at the injection site, aching or headache are common after vaccination in people with, and without, DS
• In the majority of 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. 
• Treatment with paracetamol before, and for 24 hours after the vaccine, may reduce some side effects 
• Treatment with a short course of benzodiazepines may reduce any short-term increase in seizures associated with vaccination in a person with DS, and should be discussed with your neurologist 

The impact of COVID-19 in Dravet syndrome: A UK survey

In June/July 2020, DSUK conducted a survey to understand the risks, impact and outcome of COVID-19 in people affected by Dravet Syndrome. 

An anonymous cross-sectional online survey was conducted between 17th June and 13th July 13 2020, with responses from 116 parent/carers of children (74%) and adults (26%) with Dravet Syndrome. The full findings from the survey are published in peer-review medical journal, Acta Neurologica Scandinavica, and can be viewed online at https://doi.org/10.1111/ane.13405.

Key findings from the survey include:

• ‘Extremely vulnerable’ status for risk of severe forms of COVID-19 was given to 43% people with Dravet Syndrome by a GP or neurologist
• Even if not deemed ‘extremely vulnerable’ by a medical professional, families adhered to shielding, with 91% of respondents shielding their child/adult at the family home during lockdown
• Symptoms compatible with COVID-19 were reported in 19% of individuals (with no significant difference between children and adults with Dravet Syndrome)
• Among symptomatic individuals, only 4 had a (swab) test, none of which was positive; one person had antibody testing (but not swab testing), which was positive for COVID-19.
• There were no deaths and in most cases, the outcome of infection was ‘benign’ (only 5% required hospitalisation due to severity of symptoms and all recovered) 
• Seizure worsening was reported (increased seizure frequency or duration or both) in 50% of those who developed possible or probable COVID-19 symptoms
• The presence of comorbidities, including susceptibility to respiratory infections, swallowing difficulties, and spinal abnormalities, was not significantly associated with the presentation of COVID-19 symptoms