ID #248 Trends in post-mortem research donation reported by the Gift from a Child program in the United States.
Beth Frenkel, Jason Liu, Michael Lee, Jeff Stevens, Kristin Yao, Caroline Kopsidas, Melissa Williams, Tanner Torrescano, Cindy Campbell, Alexandra Backlund, Angela WaandersAbstract
Background
Despite national efforts such as the Gift from a Child (GFAC) program, participation in research-based autopsy remains inconsistent across pediatric neuro-oncology. Prior single-institution studies have identified disparities in consent related to race/ethnicity, preferred language, and insurance status. In this study, our objective was to provide a multi-institutional descriptive analysis across GFAC Centers of Excellence (COEs) to examine characteristics associated with participation in postmortem tissue donation at a national level.
Procedure
We performed a multi-institutional retrospective cohort study of pediatric patients with central nervous system (CNS) malignancies who died from their disease between [date] and [date]. Participating sites were active GFAC COEs following standardized practices for offering research-based autopsy. Individual-level data included clinical characteristics (diagnosis, grade, treatment history), demographic variables (race/ethnicity, age, preferred language, religion), and insurance status.
Results
Among the 103 patient families, 52/103 (50.5%) consented to autopsy. There were several demographic trends in the consented (C) versus declined (D) groups. Patients of non-Hispanic/Latino ethnicity (C: 49.3% vs. D: 50.7%) showed a higher likelihood of consenting than Hispanic/Latino (C: 25% vs. D: 75%). Insurance status showed a similar pattern, with private insurance (C: 64.6% vs. D: 35.4%) having a higher rate of consent compared to Medicaid (C: 29.7% vs. 70.3%). Additionally, Catholic families are less likely to provide consent (C: 36.4% vs. D: 63.6%). 8/103 (7.8%) patients did not list English as their preferred language, and only 1 of these patients consented to the autopsy. These findings were consistent with previously reported data from 2021-2022.
Conclusions
In this multi-institutional cohort, these findings underscore the need for strategies aimed at improving communication pathways for non-English-speaking families. Culturally informed consent processes can guide future research advancements to benefit all children with CNS malignancies.