Veronica Hood, PhD

“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. 

Hood V, Ali QZ, Knupp K, et al. COVID-19 vaccination and Dravet syndrome. Presented at AES Annual Meeting; December 3-7, 2021; Chicago, IL and Virtual. Abstract 1.411

Videos

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] 

Vaccination and Seizure Risk in Dravet Syndrome: Veronica Hood, PhD, MS

“With this very new vaccine that has come out for COVID-19, we want to help families understand what reactions have been within the community to COVID-19 vaccination.”

, PhD, MS, scientific director at the Dravet Syndrome Foundation

sat down with NeurologyLive® following her presentation at the 

, December 3-7, 2021, in Chicago and virtually, outlining a study on the surrounding effect of COVID-19 vaccination in patients with Dravet syndrome (DS). The study surveyed 120 caregivers of patients with DS, with responses indicating that vaccination was generally well-tolerated in this patient population, as only 13% reported increased seizure activity. Additionally, over 50% of respondents reported their patient had no side effects. 

Hood noted that patients with DS may have seizures after any vaccination, mostly likely due to fever, but seizures have also been reported following vaccination without a fever present. In light of COVID-19, there is a need for patients with DS to be vaccinated, but it remains an area of concern for patients, as well as their families and caregivers. In asking caregivers about patients’ response to COVID-19 vaccination, investigators aimed to develop a better understanding of how the process affects patients with DS. The survey further queried 158 caregivers whose patients had not been vaccinated, asking how they felt about the process and whether they planned to get their child vaccinated when eligible. Of these patients, 91 reported the patient would not plan to get vaccinated once eligible. 

Hood V, Ali QZ, Knupp K, et al. COVID-19 vaccination and Dravet syndrome. Presented at AES 2021; December 3-7, 2021; Chicago, IL and Virtual. Abstract 1.411 

The scientific director at the Dravet Syndrome Foundation discussed a recent survey asking caregivers about the experiences of patients with DS following COVID-19 vaccination. [WATCH TIME: 3 minutes]

COVID-19 Vaccination in Patients with Dravet Syndrome: Veronica Hood, PhD, MS

"Patients who may be coded as having generalized intractable epilepsy may not fully represent the spectrum of the disease. That may limit what insurance is willing to pay for, whether that be medications or services related to that diagnosis.”

The Dravet Syndrome Foundation (DSF) recently announced that the National Center for Health Statistics designated new and specific ICD-10 codes for Dravet syndrome (DS). Among them include G40.83 DS, G40.833 DS intractable with status epilepticus, and G40.834 DS intractable without status epilepticus.

Until this point, DS was included in the ICD-10 as code G40.8 other epilepsy and recurrent seizures, which contained a broad group of epileptic disorders with different causes and treatment strategies that are not specific to DS. The new codes will allow clinicians to conduct epidemiologic research and prospective studies, determine true prevalence and morbidity and mortality rates, and help recruit patients for clinical trials.

Veronica Hood, PhD, research coordinator, DSF, claims the codes can bring immediate benefit in both the clinical care setting and from the patient-community perspective. Hood sat down with 

 to discuss the need for these codes and what went into the decision for change.

The research coordinator of the Dravet Foundation provided background on the new ICD-10 codes announced for Dravet syndrome and how they came about.

Veronica Hood, PhD

Articles

Vaccination and Seizure Risk in Dravet Syndrome: Veronica Hood, PhD, MS

COVID-19 Vaccination in Patients with Dravet Syndrome: Veronica Hood, PhD, MS

Veronica Hood, PhD: New ICD-10 Codes for Dravet Syndrome

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