COVID-19 Experiences in the Developmental and Epileptic Encephalopathy Community
Abstract number :
3.476
Submission category :
17. Public Health
Year :
2022
Submission ID :
2232936
Source :
www.aesnet.org
Presentation date :
12/5/2022 12:00:00 PM
Published date :
Nov 22, 2022, 05:28 AM
Authors :
Daniel Freedman, DO – The University of Texas at Austin Dell Medical School; Gabrielle Conecker, MPH – DEE-P Connections; Richard Carpiano, PhD, MPH – School of Public Policy – University of California Riverside; JayEtta Hecker, MS – DEE-P Connections; Tina Sosa, MD – University of Rochester Medical Center – Golisano Children's Hospital; Anne Berg, PhD – Neurology – Northwestern University Feinberg School of Medicine
This is a Late Breaking abstract
Rationale: Because of wide-ranging medical conditions, people with Developmental and Epileptic Encephalopathies (DEE), are at potentially greater risk of consequences from COVID-19 infection and may have heightened sensitivities to vaccination. We assessed the impact of COVID-19 infections in DEE patients and obtained data on vaccine uptake and concerns of caregivers.
Methods: A web-based survey for caregivers of children with DEE was distributed in English via social media and DEE community advocacy groups between July 15 and September 15, 2022. This effort was coordinated by DEE-P (Developmental and Epileptic Encephalopathy-Project) Connections, an advocacy group supporting DEE families.
Results: The 180 respondents reported living in North America (78%), Europe (16%) and 6% from other regions. Their children with a DEE represented 37 distinct disease groups–the most common were: KCNQ2, PCDH19, SCN8A, and SYNGAP1. Eighty-eight (56%) were female. Ages, in years, were < 1 (2%), 1-17 (81%) and >17 (17%). Of 155 responding (see Table 1), 50% reported their child had a positive COVID-19 rapid antigen or PCR test, 9% reported a second COVID-19 illness, and 5% suspected their child had contracted COVID-19 but without confirmation. At the time of their most severe COVID-19 illness, 80% of these children were unvaccinated. Symptoms and severity of COVID-19 infections are described in Table 1 with 13% of children requiring hospitalization. Table 1 also includes reported post-COVID-19 symptoms. For COVID-19 vaccination, of 95 parents who provided responses, 51% said their children were vaccinated and 10% intended to vaccinate. Another 17 (11%) were undecided, and 44 (28%) had decided against vaccination. Of the 44 parents who were against vaccinating their children for COVID-19 ("Against"), 22 (50%) had adhered to routine pediatric vaccination schedules versus 70/79 (89%) of parents with COVID-vaccinated children (p < 0.0001). In the Against group, 43% lived in households where nobody was vaccinated versus 0% of those whose children were vaccinated or intending to vaccinate (P < 0.0001). Sources of information about COVID-19 vaccination differed between groups with the Against group relying less on healthcare providers (55%) versus >=85% for the other groups (p=0.0004) and more on community resources (55% versus 19-41% for other groups, p=0.008). Vaccination was well tolerated in most (71%) of the 95 vaccinated respondents. The reported post-vaccination symptoms (Table 2) included fever (64%), lethargy (41%) and increased seizures (32%). Most symptoms were reported as transient, lasting 24-48 hours.
Conclusions: The effects of the COVID-19 pandemic on patients with DEEs have been wide ranging with rare—but serious—effects from the infection. The majority of parents/caregivers reported that their child with a DEE was either already or will be vaccinated; however, a sizable minority are either undecided or do not intend to vaccinate. Though this was a limited sample size, the data can help inform neurologists’ discussions with DEE families about post-COVID-19 infection complications and vaccination concerns.
Funding: No funding was received in support of this abstract.
Public Health