“Socioeconomic factors associated with participation in post-mortem
tissue donation in pediatric central nervous system (CNS) tumors”
Abstract
Background : The gift of post-mortem tissue donation
is critical to pediatric CNS research. As a “Center of Excellence” for
the Gift from a Child Program, our institution has a well-established
post-mortem tissue donation program. Our objective was to determine if
differences exist between patients that participated in and those that
declined research-based autopsy. Procedure: We performed a
single-institution retrospective chart review of pediatric patients with
CNS malignancies who died from their disease between 1/1/2021 and
12/31/2022. Individual clinical, demographic, and socioeconomic data
were assessed. Population-level data were estimated using Zip Code
Tabulation Areas. Descriptive statistics were used to compare
categorical data. Results : Among the 23 patient families
approached during the study time frame, 8/23 (35%) consented to
participation. In the consented (C) vs. declined (D) group, there was a
higher percentage of White, Non-Hispanic/Latino patients by
self-reported race (C: 88% vs. D: 55%) and no patients who identified
as Asian or Hispanic/Latino (C: 0% & 0% vs. D: 13% & 27%). Of all
patients approached, 2 required interpreters (9%) and both families
declined participation. The rate of private insurance was higher in the
consented group (C: 75% vs D: 47%) compared to Medicaid as primary
insurance in the declined group (C: 13% vs D: 53%).
Conclusions : Future research should aim to understand and
improve identified disparities to ensure research advancements benefit
all children with CNS malignancies. One area we plan to address is
improved communication with non-English speaking families by partnering
with our interpreter services.