OTHR-15. Post-Mortem Brain Tumor Tissue Donation in Pediatric Neuro-Oncology: A Mechanism for Insight into Family and Patient Experiences

Le résumé fourni par la source

Abstract Post-mortem (PM) brain tumor tissue donation, facilitated through initiatives like Gift from a Child (GFAC), offers unique opportunities to advance pediatric neuro-oncology research while exploring the family experience. Families who choose PM donation often do so despite the absence of direct benefit to their child, motivated instead by the prospect of contributing to the development of future treatments for other patients. This decision requires a foundation of trust, transparent communication, and a shared understanding of the donation’s altruistic purpose. Preliminary findings suggest that families who participate in PM donation are satisfied with their decision and often express a desire for follow-up information regarding the impact of their contribution on research and therapeutic advancements. This multi-modal follow-up workflow which includes surveys and focus groups, provides valuable insights into families’ experiences and supports the development of best practices for physician communication and end-of-life care. Additionally, this process informs training programs for healthcare providers, enabling more timely, sensitive and effective discussions about PM donation and easing its adoption in smaller institutions.Existing multi-institutional consent frameworks, while varied, already incorporate language permitting follow-up engagement, retrospective chart reviews, and inter-center collaboration. By standardizing these practices and enhancing communication, the PM donation process can be refined to better support families, physicians, and research efforts, ultimately improving the care of children with terminal diagnoses and advancing the field of pediatric neuro-oncology.

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