Disparities in glioblastoma care: Insights from a nationwide survey.

Abstract

11112 Background: Glioblastoma (GBM) care requires specialized, multidisciplinary management, often creating barriers to healthcare delivery and disparities in care. To identify disparities in how GBM is treated across the United States, we conducted a nationwide survey evaluating healthcare quality and accessibility for GBM patients. Methods: OurBrainBank, a patient-led GBM nonprofit, designed and distributed a 36-item HIPAA-compliant survey covering patient experience, quality of life, and demographic data in collaboration with a professional market research company. The survey, available from February to September 2024, targeted current GBM patients, current caregivers, or caregivers who have lost someone within the last year. Recruitment involved newsletters, social media, and communication partnerships with brain cancer organizations. We hypothesized that financial and educational disparities would influence GBM care experiences, assessed through logistic and linear regression using R (version 4.0.5). Only patients with non-missing data were included for each regression analysis. Results: Of 525 participants overall (77% caregivers; 23% patients), the median age at diagnosis was 59, with 58% being male, 55% with a college degree, 66% with private insurance and 94% living in urban areas. Education and financial difficulties were associated with disparate GBM care experiences, controlling for age, race, gender, geography (rural, small town, urban), and insurance type (private, public). Participants with no college education (21%) were significantly less likely to be informed about tissue storage (OR = 0.40, 95% CI [0.21, 0.75], p = .004), to undergo MGMT and IDH testing (OR = 0.28, 95% CI [0.11, 0.68], p = .005), to be offered a clinical trial (OR = 0.50, 95% CI [0.29, 0.86], p = .013), and to discuss a second opinion with their doctor (OR = 0.44, 95% CI [0.26, 0.73], p = .002) compared to those with a college degree (55%). They also reported lower satisfaction with care on a 1-10 scale (β = -0.70; 95% CI [-1.26, -0.13], p = .016). These disparities were not observed in participants with some college experience (24%) compared to those with college degrees. Participants reporting financial difficulty in the past year (29%) were also less satisfied with their care (β = -0.58, 95% CI [-1.06, -0.10], p = .018). Financial struggles, however, did not significantly impact mutational testing (OR = 0.57, 95% CI [0.28, 1.18], p = .12), clinical trial offers (OR = 1.25, 95% CI [0.81, 1.92], p = .31), or second opinion discussions (OR = 0.94, 95% CI [0.62, 1.44], p = .79). Conclusions: This survey highlights disparities in GBM care, with lower educational attainment linked to reduced access to mutational testing, second opinion discussions and clinical trials, and both lower education and financial difficulties associated with lower care satisfaction. Addressing these disparities is critical to improving GBM care nationwide.