Creating a neuro-oncology framework for an empowered and engaged peer volunteer patient community

Abstract Background Brain tumor patients often face isolation, identity loss, and existential distress. Peer-to-peer support can address these challenges, yet little guidance exists for supporting neuro-oncology patient volunteers who provide such care. Herein we describe our institutional experience with an innovative program that supports volunteers and provides for peer-to-peer initiatives in neuro-oncology. Methods In 2020, the UCSF Sheri Sobrato Brain Cancer Survivorship Program launched a peer support initiative pairing brain tumor patients with trained volunteer peers. To support volunteers, the program offers an optional ongoing community facilitated by a cancer coach trainer, a neuropsychologist, and a social worker. Weekly sessions included training, check-ins, group discussions, feedback opportunities, and an annual feedback survey. Results Between August 2020 and October 2023, six cohorts (46 peer volunteers) were trained, with a total of 132 peer matches made for 116 patient requests. Most volunteers (70%) attended 11 or more weekly meetings. All respondents to the annual feedback survey (n = 30) expressed high satisfaction with the program. Volunteers highlighted benefits including mutual support, a sense of community, meaningful contributions, personal growth, and empowerment. Conclusion 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 are a plausible and effective way to enhance a peer-to-peer volunteer program. Future efforts will focus on developing a structured curriculum for neuro-oncology patient peer volunteers and prospective evaluation of the impact of the program.