OTHR-01. SUCCESSFUL DEVELOPMENT OF A LOCAL-REGIONAL POST-MORTEM BRAIN TUMOR DONATION PROGRAM

Patient tumor tissue is vital to development of therapeutic interventions in the setting of refractory CNS tumors. Patients and families who participate in tumor donation (TD) report meaning making and improved bereavement outcomes. Provider discomfort is a significant barrier to autopsy participation. Families who are not approached for tumor donation report distress or a feeling of a missed opportunity. Our center developed a process to offer all patients who died from their disease the option to participate in TD as a standard of care. Discussions around TD are best done in the context of a multidisciplinary team well known to the patient and family lead by the treating oncologist. Opportunities to discuss TD present themselves at predictable time points in the disease trajectory: day one talk, treatment discussion, time of recurrence, clinical deterioration, advance care planning discussions, end of life, and immediately-post mortem. Our practice is in the setting of a free-standing children’s hospital. We are not a phase one site. In 2022 seven patients in our neuro-oncology program died from progressive disease. Seven of seven chose to participate in TD. We partnered with a regional phase one center and SWIFTY foundation to coordinate logistics and enrollment. All tumor procurements occurred off site at the funeral home selected by each family. To facilitate family comfort with TD a local team member was present at the time of harvest and kept family updated in process in real time via phone call at the following time points: time of harvest, completion of harvest, tissue arrival at research site. Future directions include offering structured post-mortem visits with families to review research findings with primary treating oncologist in conjunction with the research team and conducting prospective studies with bereaved families to better understand the impact of TD on bereavement.