QOL-13. FROM SURVIVING TO THRIVING WITH A BRAIN TUMOR: THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO NEUROONCOLOGY MODEL FOR AN EMPOWERED AND ENGAGED PEER VOLUNTEER SUPPORT COMMUNITY

Abstract BACKGROUND Brain tumor patients often experience feelings of isolation, identity loss, and existential distress, and peer support can have a positive impact in these areas. Providing peer support, however, can be emotionally demanding and presents unique challenges for neuro-oncology patient volunteers, with little guidance available to address these issues. We describe an innovative program that supports volunteers and provides a roadmap for implementing peer volunteer programs in clinical neuro-oncology practices. METHODS In 2020, the UCSF Sheri Sobrato Brain Cancer Survivorship Program established an initiative to match brain tumor patients seeking support with trained patient volunteers. To address potential challenges, an optional, ongoing support community for volunteers was created by a health coach educator, with co-facilitation from a rehabilitation neuropsychologist and a social worker. The weekly meetings included supplemental training, personal check-ins, and group discussions. Volunteer feedback was collected through direct volunteer communication with the facilitator and an annual online survey. RESULTS From August 2020 through October 2023, 46 peer volunteers were trained in six cohorts. There were 116 patients requesting peer support. In total 132 volunteer-patient matches were made for an average of 2.87 matches per volunteer. Seventy percent of volunteers attended 11 or more meetings/year. Average attendance was 12 volunteers per meeting. All respondents to the annual online survey (n=31) reported a high level of satisfaction with the program. Volunteers highlighted benefits such as mutual support, impactful contributions, and personal growth and empowerment. Volunteers who reported higher levels of preparedness attended >11 meetings per year. DISCUSSION In our experience, patient peer volunteer programs show promise in reducing isolation and restoring purpose. This unique 3-year pilot suggests that ongoing group support and training is a plausible and effective way to enhance a peer volunteer program. Future efforts will focus on developing a structured curriculum for neuro-oncology patient peer volunteers.