Building a caregiver program in neuro-oncology: Clinical experience and real-world data from the first 10 years of the UCSF experience

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ID: 328045
2026
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Abstract
Abstract Background Caregivers of patients with primary brain tumors are at high risk for distress as they navigate caring for their loved one with a cancer diagnosis and neurologic disorder. The UCSF Gordon Murray Caregiver Program is a fully integrated clinical program, providing personalized care and programming to caregivers with dedicated nurse, social worker, and administrator through prospective and reactive outreach. We report our real world experience of the Program from over a decade of clinical experience. Methods Caregivers were included from 01/2017 – 12/2023 and divided into GBM Outreach; New to Clinic; and Referrals. Demographic data, and predefined, categorized Concerns and Interventions were extracted from the first Program encounter from medical records. Concerns and Interventions were tallied and complex relationships analyzed using heterogeneous knowledge graphs by Group. Results We identified 1,544 individual caregivers with Program encounters: 635 GBM Outreach; 615 New to Clinic; and 297 Referrals. Demographics were as expected with 66% females; 77% aged 41-64; and 65% spouses. Concerns were highest in Referrals Group. Concerns across all Groups included Informational (42%), followed by Emotional (25%) and Practical (24%). Eighty-four percent of caregivers received at least one Intervention, most commonly Emotional Support. Network analyses identified clinically relevant clusters. Conclusions Caregivers of patients with primary brain tumors are at high risk of distress with unique needs. Our clinical experience of a dedicated, integrated, caregiver program suggests needs that cluster together and identifies opportunities to develop tailored resources to address these needs. Dedicated caregiver programming should be incorporated into brain tumor centers.
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Authors Jennie Taylor, Eduardo Rodriguez Almaraz, Cherrie Demayo, Margaretta Page, Candice Velasco, Desiree Angelo, Anh Huan Vo, Susan M Chang
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Journal Neuro-Oncology Practice
Year 2026
DOI
10.1093/nop/npag091
URL
https://doi.org/10.1093/nop/npag091
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