Abstract
Abstract We evaluated the quality and accessibility of healthcare for Glioblastoma (GBM) patients across the United States through an online survey distributed to 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. 78% described having some college education, and 69% reported commercial insurance coverage. Our preliminary findings highlight that 82% of respondents reported that their treating doctor recommended the standard-of-care for GBM consisting of tumor resection, 3-6 weeks of chemo/radiation, and 6 months of chemotherapy and sometimes Tumor-Treating-Fields (TTF), per the Comprehensive- Cancer-Network (2021) guidelines. 40% reported no discussion of TTF as an option. Of those offered TTF, nearly half (46%) received it as part of their initial treatment combined with standard chemotherapy and 36% received it as a subsequent option. For those attempting to access TTF, 29% encountered difficulties, often due to financial constraints linked to insurance denials. These findings illuminate significant concerns regarding dissemination of information on treatment options, as well as access to treatments. Access to these treatments can have a significant influence on survival and quality of life of GBM patients. The substantial number of patients not offered TTF, combined with challenges to accessing treatments due to insurance issues, highlight critical obstacles to engaging in informed and shared decision-making. Compared to the general GBM-affected population, our survey respondents tend to be younger and from urban areas, indicating a possible selection bias in survey participation. This skew could lead to an underrepresentation of the challenges encountered by patients facing additional barriers. We are adopting measures to engage a more diverse participant group, especially from rural communities Ongoing targeted recruitment will further elucidate barriers to patient-centered care in GBM, with the potential for significant improvements in survival and QOL.
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