Objective To compare hesitancy toward a future COVID-19 vaccine for children of various sociodemographic groups in a major metropolitan area, and to understand how parents obtain information about COVID-19. Methods Cross-sectional online survey of parents with children < 18 years old in Chicago and Cook County, Illinois, in June 2020. We used logistic regression to determine the odds of parental COVID-19 vaccine hesitancy (VH) for racial/ethnic and socioeconomic groups, controlling for sociodemographic factors and the sources where parents obtain information regarding COVID-19. Results Surveys were received from 1702 parents and 1425 were included in analyses. Overall, 33% of parents reported VH for their child. COVID-19 VH was higher among non-Hispanic Black parents compared with non-Hispanic White parents (Odds Ratio (OR) 2.65, 95% Confidence Interval (CI): (1.99–3.53), parents of publicly insured children compared with privately insured (OR 1.93, (1.53–2.42)) and among lower income groups. Parents receive information about COVID-19 from a variety of sources, and those who report using family, internet and health care providers as information sources (compared to those who don’t use each respective source) had lower odds of COVID-19 VH for their children. Conclusions The highest rates of hesitancy toward a future COVID-19 vaccine were found in demographic groups that have been the most severely affected by the pandemic. These groups may require targeted outreach efforts from trusted sources of information in order to promote equitable uptake of a future COVID-19 vaccine.

Objectives Seizure burden is typically measured by seizure frequency yet it entails more than seizure counts, especially for people with severe epilepsies and their caregivers. We aimed to characterize the multi‐faceted nature of seizure burden in young people and their parents who are living with severe early‐life epilepsies. Methods A one‐day workshop and a series of teleconferences were held with parents of children with severe, refractory epilepsy of early‐life origin and providers for children with epilepsy. The workshop sessions were structured as focus groups and aimed to identify components of seizure burden and their impact from the perspective of parents and providers. Data were gathered, organized, and refined during the workshop using an iterative 4‐step process that drew upon grounded theory. Results Three primary components of seizure burden were identified: frequency, severity, and unpredictability, which was as important if not more important at times than frequency and severity. Caregivers noted that the impacts of seizures were experienced as acute‐immediate consequences, longer‐term consequences, and as chronic effects that develop and evolve over time. The severity of the child's neurological and medical status as well as where in the disease journey a family was represented additional contextual factors that influenced the experience of seizure burden. Significance Patient‐reported and patient‐centered outcomes are increasingly incorporated into the evaluation of treatment effectiveness. Without understanding how the disease creates burden for the patient (or family), it is difficult to know how to assess the impact of treatment. Our preliminary findings indicate seizure burden is a complex construct and unpredictability can be as important as frequency and severity.

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