Socioeconomic Factors Associated With Participation in Postmortem Tissue Donation in Pediatric Central Nervous System Tumors.

Abstract

Background: The gift of postmortem tissue donation is critical to pediatric central nervous system (CNS) research. As a "Center of Excellence" for the Gift from a Child Program, our institution has a well-established postmortem tissue donation program. Our objective was to determine if differences exist between patients who 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 January 1, 2021 and December 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) versus 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% and 0% vs. D: 13% and 27%). Of all patients approached, two 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.