QOL-11. GBM PATIENTS CONTINUE TO FACE BARRIERS TO PERSONALIZED AND COMPREHENSIVE CARE THAT MAY IMPACT LONGEVITY AND QUALITY-OF-LIFE

Abstract We assessed the quality and accessibility of healthcare services provided to Glioblastoma (GBM) patients across the United States through an online survey distributed among the OurBrainBank community and partners and promoted on social media. A total of 297 patients or caregivers completed the survey (85% caregivers; 15% GBM patients). Median age at diagnosis was 57, lower than the national average of 64. 78% of our respondents described having some college education, and 69% had commercial insurance. Preliminary results revealed that 69% were informed about tumor testing. Among those informed, 64% did not have any molecular testing beyond initial diagnostic tests. For all respondents, 65% were not informed about storing tissue for future testing, and 79% reported not having their tissue stored for possible treatments or clinical trial qualification. Additionally, 52% reported no discussion of seeking a second opinion, and 64% reported not being offered enrollment in any clinical trial. Overall, people living with GBM face significant barriers to achieving comprehensive and personalized care. Lack of tumor testing and storage present missed opportunities for future access to emerging therapies that could improve individual outcomes. Over half of patients had no discussion about seeking a second opinion and were not offered enrollment in clinical trials, highlighting significant barriers to accessing life-extending or quality-of-life (QOL) improving treatments. Compared to the general population affected by GBM, survey respondents represented a disproportionately young and urban population, suggesting potential bias in who is able to respond to the survey. This may underestimate the challenges faced by patients with additional barriers. We are implementing strategies to reach a more geographically diverse participant group, particularly in rural areas. Ongoing targeted recruitment will further elucidate barriers to patient-centered care in GBM, with the potential for significant improvements in survival and QOL.