SPCR-03 ACCESS TO CRITICAL GENOMIC TUMOR TESTING FOR GLIOBLASTOMA (GBM) PATIENTS

PURPOSE: Assess whether GBM patients are being offered access to tumor testing at all stages of treatment as an essential first step toward personalized medical treatment of this fatal disease.Method: On-line survey sent to OurBrainBank Community. RESULTS: More than 90 patients and/or caregivers completed the survey. Results revealed that 50 percent were never informed about tumor testing prior to their initial surgery, and some were never informed. Seventy percent were unsure or were never informed of the importance of storing tissue once collected. For the 30 percent who knew of tissue storage, only half actually had tissue stored. More than half did not know about tumor types or mutations. Only half felt that they received enough information and education to make good decisions. The best statistic was that those in urban areas were able to get care at a hospital that specialized in brain tumors. In addition, the survey revealed that 50 percent of participant GBM patients felt that they had an equal and collaborative relationship with their medical team, and 50 percent did not. CONCLUSIONS: GBM patients and their caregivers are not treated consistently, particularly in regard to genomic tumor testing, which has become a vital first step toward personalized treatment. In this study, while some patients were provided information about their condition, 50 percent were not provided any information at all, or limited, and not based on individual patient needs. Geographical inequalities between urban and rural areas partly explain these disparities.