The scientific director at the Dravet Syndrome Foundation commented on the concern associated with vaccination in this patient population, noting that investigators have not observed an exacerbated risk profile with the COVID-19 vaccines. [WATCH TIME: 2 minutes]
WATCH TIME: 2 minutes
“While I don't want to discount the caregiver experience, I think we are able to allay some of those fears that families have and allow them to have information, facts, and real experiences to base their own decision-making process on.”
Any vaccination can trigger increased seizure activity in patients with Dravet Syndrome (DS), creating a sense of hesitancy for patients and caregivers when it comes to choosing whether to receive a vaccine. The nascent COVID-19 vaccinations have become available to this patient population, with a recent survey of 120 caregivers of patients with DS suggesting the available vaccines were generally well-tolerated.
An additional 158 caregivers reported that their patients had not been vaccinated, and 91 reported that they did not plan to vaccinate their patient vaccinated once eligible. Veronica Hood, PhD, MS, who presented survey data at the American Epilepsy Society (AES) Annual Meeting, December 3-7, 2021, in Chicago and virtually, sat down with NeurologyLive® to discuss this concern that exists in the DS field, noting that she does not want to discount patients’ or caregivers’ experiences, as roughly 30% of survey respondents noted their patient had previously experienced a seizure associated with vaccination.
As the findings from the survey indicate risk for breakthrough seizures following the COVID-19 vaccine was relatively low at 13%, results may better inform the decision-making process around vaccination. The added layer of information coming from peers in the DS community, as opposed to strictly from clinicians, may offer further reassurance for patients and families, Hood said.
For more coverage of AES 2021, click here.