580 - Identifying Priorities for Pediatric Pandemic Preparedness in Research Ethics and Policy: A Community- and Expert-Engaged Approach

Publication Number: 580.5330

Ava T. Jurden, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Stephanie A. Kraft, Geisinger, Danville, PA, United States; Abril Beretta, Seattle Children's, seattle, WA, United States; Jacqueline P.. Burke, American Academy of Pediatrics, Lake Zurich, IL, United States; Marie E. Heffernan, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Ravi Jhaveri, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Larry Kociolek, Northwestern University The Feinberg School of Medicine, Frankfort, IL, United States; Olivia Orr, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Jeffrey Poomkudy, Northwestern University The Feinberg School of Medicine, Chicago, IL, United States; Jennifer Saper, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Seema K. Shah, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States

Background: Despite some efforts to identify lessons from the COVID-19 pandemic to improve research governance, little attention has focused on the needs of children and families.

Objective: To identify expert and community perspectives on mistakes in decisions about pediatric research during the COVID-19 pandemic and lessons for future pediatric pandemic preparedness.

Design/Methods: This mixed-methods study involved 4 focus groups (2 with parents (n=13), 2 with adolescents (n=16)) and a nationally representative survey (n=1000 parents and n=500 adolescents). To be eligible, adolescents had to be 13-17 years old; parents must have had at least one child (age 4-18) during the COVID-19 public health emergency. In focus groups, adolescents and parents reviewed both the 20 pediatric research failures identified by experts and the infographic for clarity and comprehensiveness. In the survey, participants reviewed the infographic then were asked to rank each pediatric research failures as “a big problem, somewhat of a problem, or not a problem.” Survey rankings were used to identify a list of the highest priority pediatric research ethics and policy failures.

Results: In focus groups, three themes were identified: Connections between Communication and Trust, One Size Policies Do Not Fit All, and Dropping the Ball on Children’s Psychosocial Needs. Feedback from focus groups was also used to refine the infographic and list of pediatric research failures. Preliminary results from the survey show that both parents and adolescents rank the risks of school closures and the mental health crisis in children to be two of the biggest research failures from the pandemic (Tables 2 and 3). Conversely, parents and adolescents rank the delayed access to vaccines for children and the later inclusion of pregnant and breastfeeding people in vaccine research to be two of the least important research failures from the pandemic. The largest discrepancy in ratings between parents and adolescents was that parents rated poor communication about the evidence for masking as one of their top 3 priorities, while it was in the bottom 3 for adolescents.

Conclusion(s): Children were left behind in the response to the COVID-19 pandemic and continue to be neglected in efforts to advance pandemic preparedness. This top 10 list serves as a call to action to accelerate pediatric research ethics in advance of future pandemics, particularly regarding pediatric mental health and understanding and mitigating the effects of school closures.

Table 1. Focus Group Demographic Characteristics


Table 2. Preliminary Survey Results - Parent Top 10 Research Failures


Table 3. Preliminary Survey Results - Adolescent Top 10 Research Failures