QOL-35. Disparities in Glioblastoma Care: A National Survey on Access to Trials, Testing, and Informed Decision-Making

Abstract Equitable access to high-quality glioblastoma (GBM) care is essential to patient outcomes, yet remains uneven across the U.S. population. In 2024, we presented preliminary findings at the SNO Annual Meeting, highlighting major gaps in tumor testing, clinical trial access, and second opinion discussions. Building on that work, and in alignment with the principles outlined in the GBM Bill of Rights, we expanded our national survey to identify statistically significant disparities in GBM care delivery related to social determinants of health. A 36-item HIPAA-compliant survey was developed by OurBrainBank, a patient-led nonprofit, and fielded via Survey Healthcare Global from February to September 2024. Respondents included GBM patients, current caregivers, and caregivers bereaved within the past year. Chi-square tests were used to examine associations between demographic predictors (e.g., education, insurance, geography) and patient-reported care experiences. Among 525 respondents (77% caregivers; 23% patients), the median age at diagnosis was 59; 55% had a college degree, 66% held private insurance, and 49% received care at an NCI-designated cancer center. Chi-square analyses revealed statistically significant disparities across multiple domains of GBM care. Patients treated at NCI centers, those with higher education, and younger patients were more likely to be offered clinical trials (p <.05); enrollment was also associated with NCI care, male gender, and younger age, but not education. Tumor testing and tissue storage awareness was more common among patients treated at NCI centers, with higher education, or living closer to treatment sites (p <.05). Mutation testing was more likely among patients who were younger, privately insured, urban-based, college-educated, and treated at NCI centers (p <.05). Second opinion discussions were more frequent among privately insured and college-educated participants (p <.05). These findings extend our prior work, underscoring the urgent need to address disparities in GBM care and ensure all patients are informed, empowered, and offered comprehensive treatment options.

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Publication Details

Journal
Neuro-Oncology
Published
2025-11-01
DOI
https://doi.org/10.1093/neuonc/noaf201.1536
Primary Topic
Biomedical Ethics and Regulation
Type
article
Field-Weighted Citation Impact
0.00
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article

QOL-35. Disparities in Glioblastoma Care: A National Survey on Access to Trials, Testing, and Informed Decision-Making

Lakshmi Nayak, David Robles, Jacob Ellen, Kelli Duprey et al.
Neuro-Oncology
Biomedical Ethics and Regulation
article

QOL-35. Disparities in Glioblastoma Care: A National Survey on Access to Trials, Testing, and Informed Decision-Making

Lakshmi Nayak, David Robles, Jacob Ellen, Kelli Duprey, Ed Pilkington, FABIO MASSAITI IWAMOTO, Quinn T Ostrum
article en

Abstract

Abstract Equitable access to high-quality glioblastoma (GBM) care is essential to patient outcomes, yet remains uneven across the U.S. population. In 2024, we presented preliminary findings at the SNO Annual Meeting, highlighting major gaps in tumor testing, clinical trial access, and second opinion discussions. Building on that work, and in alignment with the principles outlined in the GBM Bill of Rights, we expanded our national survey to identify statistically significant disparities in GBM care delivery related to social determinants of health. A 36-item HIPAA-compliant survey was developed by OurBrainBank, a patient-led nonprofit, and fielded via Survey Healthcare Global from February to September 2024. Respondents included GBM patients, current caregivers, and caregivers bereaved within the past year. Chi-square tests were used to examine associations between demographic predictors (e.g., education, insurance, geography) and patient-reported care experiences. Among 525 respondents (77% caregivers; 23% patients), the median age at diagnosis was 59; 55% had a college degree, 66% held private insurance, and 49% received care at an NCI-designated cancer center. Chi-square analyses revealed statistically significant disparities across multiple domains of GBM care. Patients treated at NCI centers, those with higher education, and younger patients were more likely to be offered clinical trials (p <.05); enrollment was also associated with NCI care, male gender, and younger age, but not education. Tumor testing and tissue storage awareness was more common among patients treated at NCI centers, with higher education, or living closer to treatment sites (p <.05). Mutation testing was more likely among patients who were younger, privately insured, urban-based, college-educated, and treated at NCI centers (p <.05). Second opinion discussions were more frequent among privately insured and college-educated participants (p <.05). These findings extend our prior work, underscoring the urgent need to address disparities in GBM care and ensure all patients are informed, empowered, and offered comprehensive treatment options.

Neuro-OncologyVol. 27(Supplement_5)
Harvard University (US), St. Francis College (US), Duke University (US), Columbia University Irving Medical Center (US), Dana-Farber Cancer Institute (US)
Openalex Percentile: Top 58%
Biomedical Ethics and Regulation
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