HOUT-15. BRAIN TUMOR PATIENT AND CAREGIVER SURVEY ON CLINICAL TRIALS: IDENTIFYING ATTITUDES AND BARRIERS TO PATIENT PARTICIPATION

The National Brain Tumor Society conducted an online survey to determine if, when, and how information about clinical trials is provided to brain tumor patients and their caregivers, as well as to understand the perceptions and barriers around clinical trial participation. Questions were tailored for either patient or caregiver respondents, each with further stratification based on whether the patient was newly diagnosed/first occurrence or diagnosed with a recurrent primary brain tumor. There was a total of 1,463 respondents, of which 54% were caregivers with 73% of patients having/had first occurrence brain tumors. Among the different brain tumor types represented in the sample, glioblastoma made up the majority (36%), followed by meningioma (18%), astrocytoma (17%), oligodendroglioma (11%) and a mix of other types (29%), with 2% of respondents unsure of their diagnosis. The survey was open to brain tumor metastases patients, but an insufficient number of respondents met the true definition of “metastatic” preventing their inclusion in the overall analysis. When asked if patients had been informed about clinical trials by their medical team, 42% reported being informed, while 36% stated they had never discussed clinical trials with their provider. When patients were informed about clinical trials, only 24% were informed at the time of their diagnosis. Of the total sample, 21% of patients had participated in a clinical trial. When asked why patients had not participated in clinical trials, the top reasons given were: 1) the patient’s provider did not recommend participating in the trial, 2) the patient did not qualify for clinical trial(s), and 3) the patient and caregiver did not know where to find a clinical trial. The survey results underscore the need for better resources and decision support that will enable patients to be more fully informed about the importance of their participation in appropriately matched clinical trials.