DSUK survey: impact of COVID-19 in Dravet Syndrome

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

Professor Sanjay Sisodiya, a member of the DSUK Medical Advisory Board and Professor of Neurology at UCL Queen Square Institute of Neurology, commented. “While this is only a small, retrospective survey and lacks test data on infection and antibody status, it nevertheless provides valuable insights that help us better understand the impact of COVID-19 on the Dravet Syndrome community”.