Assessing loneliness in glioblastoma patients and caregivers using a nationwide survey.

Abstract

12097 Background: Loneliness is associated with poorer health outcomes and quality of life in cancer patients, yet its prevalence in the glioblastoma (GBM) population remains understudied. GBM’s rapid progression and intensive treatment demands affect both patients and caregivers, but the burden of loneliness in these groups is unknown. We conducted a nationwide survey that assessed loneliness prevalence within the GBM community. Methods: OurBrainBank, a patient-led GBM nonprofit, distributed a HIPAA-compliant survey from February to September 2024 to GBM patients, current caregivers, and caregivers bereaved within 12 months. Loneliness was measured using the validated 3-item UCLA Loneliness Scale (range 3–9), with scores ≥6 indicating loneliness. Multivariable linear and logistic regression examined associations between caregiver status, race (white vs non-white), and financial difficulties in the past year and loneliness, adjusting for age, gender, and urban vs rural residence. Results: Among 525 respondents (404 caregivers, 121 patients), median age at diagnosis was 59 years. Overall, 52.0% (273/525) met criteria for loneliness, and the median UCLA score of the sample was 6.0. Caregivers reported higher loneliness than patients: 57.4% (232/404) vs 33.9% (41/121) were lonely, with mean UCLA scores of 5.88 (SD 1.90) versus 4.78 (SD 1.81). In adjusted models, caregivers had nearly threefold higher odds of loneliness (OR 2.97, 95% CI 1.91–4.67) and UCLA scores 1.22 points higher on average compared to GBM patients (95% CI 0.83–1.61; both p < 0.001). Financial difficulty in the last year (29% of sample) was similarly associated with greater loneliness (OR = 1.85 for loneliness, p = 0.002; 0.68-point higher average UCLA scores, 95% CI 0.32-1.05, p < 0.001). Finally, non-white respondents (12% of the sample) had higher odds of high loneliness compared to white respondents (OR = 4.00, p = 0.01) and had a 0.59 point higher UCLA score on average (p = 0.03). Conclusions: In this nationwide survey, GBM caregivers experienced substantially greater loneliness than patients themselves, and loneliness was also concentrated among those facing financial hardship and among non-white respondents. These findings highlight an underrecognized psychosocial burden and support integrating caregiver-focused and equity-oriented interventions into GBM care.