OTHR-17. Guidance for providing families with autopsy research results

Abstract

BACKGROUND: The Legacy Program is a project where research autopsies are performed on the brain of Neuro-Oncology patients. There continues to be growing consensus that investigators should offer their study participants results once the research project has concluded. Several organizations like the Children’s Oncology Group have established Return of Results programs however, returning research results from autopsy samples is not a common practice. Families have voiced the importance of autopsy donation and want results from that donation. To them, this donation creates a legacy for their loved one and provides hope that their contribution to research will impact the life of future patients. As researchers, this project provides a novel platform where patients and their families can directly influence new research endeavors. OBJECTIVES: We organized a retreat to disseminate research findings to the families of patients who have donated tissue. In addition to the family members, the entire research team and clinical staff were invited. Our primary aims were to evaluate participant satisfaction and obtain feedback that would be utilized for future program planning. METHODS: At the end of the retreat a de-identified, open-ended questionnaire was handed out. Six were returned and evaluated. RESULTS: All participants were in favor of the format and content that was presented and requested an invitation to future retreats. Participant feedback included how to become more involved with the Legacy Program and the request for the creation of a social media group where families could continue to connect and provide support to each other CONCLUSIONS: Our study confirmed the importance of returning autopsy results. The retreat provided needed support to the participating families. During the retreat, researchers were able to hear direct feedback from their findings and the families voiced their goals for future research. This information was invaluable and helped shape our program.