Financial and Educational Disparities Persist in Glioblastoma Care

A nationwide survey of patients with glioblastoma and their caregivers found persistant educational and financial disparities in brain cancer care, according to research from an investigational study.

Findings from the study, co-developed by the patient-led glioblastoma nonprofit organization OurBrainBank, were presented at the 2025 American Society of Clinical Oncology (ASCO) Annual Meeting by Jacob Ellen, a student at Harvard Medical School in Boston and a member of OurBrainBank’s board.

The survey highlighted that participants without a college degree were significantly less likely to be informed about:

• Tissue storage
• MGMT/IDH testing
• Clinical trial opportunities
• Alternative treatment options

Notably, participants without a college degree also reported lower satisfaction with their care.

Furthermore, participants with financial hardship also reported having lower satisfaction with care, though no significant financial impact was observed on testing, clinical trial offers or second opinion discussions, according to the survey findings presented at ASCO.

“Both lower education and financial difficulty were significantly associated with lower satisfaction with care, even after adjusting for demographic and healthcare access variables,” researchers wrote in a poster presentation of the data.

“These findings underscore persistent disparities in [glioblastoma] care delivery and patient experience,” they added.

Key Findings: Limited Access to Testing, Clinical Trials, and Second Opinions

Among the 525 respondents to the survey, 77% were caregivers and 23% were patients. The median age at diagnosis was 59 years old, with 58% being male and 42% female. Most participants had private insurance (66%), while 44% had public insurance. Urban resident represented 86% of respondents, and 14% lived in rural areas. In terms of education, 21% had no college experience, 24% had attended some college, and 55% had a college degree.

According to OurBrainBank, among the more than 500 respondents 54% had never had a discussion with their care provider regarding second opinions, 34% were not informed about tumor testing and 36% did not receive mutational testing. Moreover, 66% were never offered a clinical trial and 69% were not informed about storing tumor tissue for future use.

“This survey highlights disparities in [glioblastoma] 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,” researchers wrote in an abstract presentation of the data published in the Journal of Clinical Oncology. “Addressing these disparities is critical to improving [glioblastoma] care nationwide.”

Understanding Glioblastoma: Incidence, Aggressiveness, and Survival Rates

Glioblastoma, according to The University of Texas MD Anderson Cancer Center in Houston, is the most common and most aggressive form of primary brain cancer, and it accounts for approximately 12,000 new cases every year in the United States. All cases of glioblastoma are considered to be grade 4 tumors, meaning they contain the most abnormal-looking cells and grow rapidly.

There is, according to MD Anderson Cancer Center, currently no cure for glioblastoma, and the median length of survival after a patient receives a diagnosis is 15 to 18 months, and the five-year survival rate of the disease is just 10%. However, as MD Anderson Cancer Center states, despite the fact that all cases of glioblastoma recur treatments can potentially control the tumor for months or years.

To conclude, investigators wrote: “Effort to improve communication about tumor testing and tumor storage, expand trial access, encourage second opinions and support underserved populations are essential to achieving more equitable care outcomes in [glioblastoma].”

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.

References

1. “Disparities in glioblastoma care: Insights from a nationwide survey,” presented at the American Society of Clinical Oncology 2025 annual meeting; https://www.asco.org/posters/POSTER496636.
2. “OurDataBank Access Request,” OurBrainBank, https://www.ourbrainbank.org/data-request/
3. “Disparities in glioblastoma care: Insights from a nationwide survey,” by Jacob Ellen et al., Journal of Clinical Oncology.
4. “Glioblastoma,” The University of Texas MD Anderson Cancer Center; https://www.mdanderson.org/cancer-types/glioblastoma.html