NCTQ-09 INITIAL SURVEY RESULTS FROM PATIENTS LIVING WITH BRAIN METASTASIS

Abstract BACKGROUND Brain metastases (BM) are the most common central nervous system (CNS) tumors in the U.S. It is estimated that more than 200,000 cases are diagnosed each year. Despite the high frequency, BM do not receive the same type of multi-disciplinary neuro-oncologic care as primary brain tumors. Therefore, the American Brain Tumor Association’s Metastatic Brain Tumor Collaborative surveyed patients in the U.S. with CNS/BM to collect information on their journey, unmet needs, and to identify gaps where support and care can be improved. METHODS A survey was developed by the Metastatic Brain Tumor Collaborative with research partner, Ipsos. The survey length was 20 minutes and data was collected online between 11/27/24-2/28/25 for adults with BM. Respondents came from Ipsos’ panels and Metastatic Brain Tumor Collaborative partners: American Brain Tumor Association, Susan G. Komen, Metastatic Breast Cancer Alliance, LUNGevity, GO2 for Lung Cancer, Melanoma Research Foundation, and the Kidney Cancer Association. RESULTS 349 patients participated in the survey. Most patients (73%) did not undergo a brain MRI until they experienced neurological symptoms. Only half of patients were offered participation in a clinical trial and only one-third of those participated. The most common reasons for lack of participation in a trial were fear of side effects (41%) and the experimental nature of a trial (37%). 35% of the respondents indicated that they were unable to work following their diagnosis with CNS/BM. CONCLUSIONS Our survey confirms that barriers still exist for CNS/BM patients to participate in clinical trials, despite their willingness. Direct patient feedback provides valuable insight toward understanding the CNS/BM journey and resources needed to support these patients. Subsequent surveys of caregivers and health care providers are planned for 2025 and will add to these findings.