QOL-03. CAREGIVER PROGRAM IN NEURO-ONCOLOGY: UCSF EXPERIENCE CARING FOR MORE THAN 4,000 CAREGIVERS OVER THE LAST 10 YEARS

Abstract BACKGROUND Caregivers of patients with primary brain tumors are at high risk for distress as they navigate caring for their loved one with both a cancer diagnosis and neurologic disorder. The UCSF Gordon Murray Neuro-Oncology Program, the first of its kind, addresses caregiver needs and is fully integrated into clinical care, providing personalized care and programming to address common challenges and foster resilience. The Program includes a nurse, administrator, and social worker. Referrals occur at the initial clinic appointment; from clinical staff; and caregivers of patients with GBM receive proactive outreach. Dedicated programming provides educational materials around common concerns and building community through support groups, annual retreats and family camp. We report our practical experience of the Program serving over 4,000 caregivers. METHODS Total number of individual caregivers were included from 01/2014 – 12/2023. Detailed demographics were extrapolated during clinical interviews from a subset. Caregiver concerns and interventions were extracted from the medical records between 01/2017 – 12/2023. RESULTS The Program serves an average of 400 caregivers and 800 encounters annually. Demographics revealed 66% females; 77% between 41-64 years of age; 60% spouse; 89% working full time; and 30% with children at home. The most common concerns were informational (42%), followed by emotional (25%), and practical (23%). Examples of informational concerns included desire for resources, understanding treatment plan/side effects, and patient behavioral changes. Emotionally, they feel overwhelmed, uncertain, and sad. Practical concerns included physically caring for patients and issues around medical insurance, disability, and finances. Most common intervention was providing emotional support (40%). CONCLUSIONS Caregivers of patients with primary brain tumors are at high risk of distress and have unique needs. Our practical 10 year experience of a dedicated, fully integrated, caregiver program highlights real world concerns of caregivers and identifies opportunities to develop tailored interventions to address these needs.