QOL-12. Patient and caregiver priorities in neuro-oncology care

Abstract BACKGROUND Despite multimodal treatment, brain tumors frequently recur and are often life-threatening. Patients commonly experience progressive neurologic decline, significantly impacting quality of life. We aimed to characterize the symptom burden of central nervous system tumors and to explore patient and caregiver experiences. METHODS In this observational study (NCT06676306), we conducted semi-structured interviews with 22 patients receiving care through the Mayo Clinic Neuro-oncology division. Caregivers were invited to participate. Demographic data were obtained from electronic medical records. Interviews were recorded, transcribed, and analyzed thematically. RESULTS Twenty-two patients (9/22, 41% female; median age 41.5 years, range 24–71) and 13 caregivers (13/22, 59%) participated. Diagnoses included astrocytoma, IDH mutant (8/22, 36%), glioblastoma (4/22, 18%), oligodendroglioma (3/22, 14%), astrocytoma, IDH wildtype (2/22, 9%), and other (5/22, 23%). The most frequently reported symptoms were headaches (13/22, 59%), cognitive changes (8/22, 36%), and fatigue (7/22, 32%). Among twenty patients who discussed treatment impacts, the most common were fatigue (45%), cognitive changes (40%), and mood changes (40%). Caregivers reported emotional toll (13/13, 100%), career changes (7/13, 54%), and difficulty balancing responsibilities (6/13, 46%). Twenty-one patients shared coping strategies, including faith (29%), hobbies (24%), and exercise (19%). All 20 respondents who discussed overall experience with neuro-oncology care reported a positive overall experience (100%), with the patient–neuro-oncologist relationship (40%) and communication (39%) cited as key contributors. For 19 patients who discussed treatment outcomes, quality of life (26%), maintaining function (21%), and tumor stability (21%) were paramount. For 9 caregivers who discussed treatment outcomes, 44% prioritized quality of life and 44% reported desire for a cure. CONCLUSIONS Brain tumors and their treatments affect patients and caregivers across physical, emotional, and social domains. Strong relationships and communication with the care team are central to patient satisfaction. Quality of life should be prioritized in neuro-oncology research and trials.