Insight into the brain metastasis journey: Initial survey results from patients and caregivers.

Abstract

2069 Background: Brain metastases (BM) are the most common central nervous system tumors in the US. Though the exact incidence is unknown, BM are estimated to occur in up to 10-20% of all cancers. Despite the high frequency, there is little systematic knowledge about how BM are typically diagnosed and treated. The American Brain Tumor Association (ABTA) seeks to understand the BM journey: symptoms, diagnosis, treatment, and end of life, through a survey of BM patients and caregivers. Methods: Two surveys were developed by the ABTA with vendor, PSB Research, after careful literature review. The surveys were reviewed by a panel of clinicians who treat BM patients. Online survey research was conducted between 8/13-9/16/18, with one survey for adults with BM (N = 237) and another for caregivers (N = 211). Respondents came from PSB’s panels and ABTA collaborators: LUNGevity, Melanoma Research Foundation and the Kidney Cancer Association. Results: Ninety percent of patients, and a similar number of caregivers, were surprised by the diagnosis, with only 20% of patients knowing about BM before diagnosis. Most caregivers were the adult child of a patient. The impact of the diagnosis was primarily emotional. Top concerns after diagnosis, for both patients and caregivers, were likelihood of treatment success and impact on quality of life. Although a majority of patients were happy with the quality of information given, they stated a need to receive a greater quantity of information about treatment success and options. Only 30% of patients were referred to a patient advocacy organization. When referred, information on treatment success rates and options was most sought. Conclusions: Direct patient and caregiver feedback provides valuable insight towards understanding the BM journey and resources needed to support patients and caregivers. A subsequent survey among oncologists and other clinicians, planned for spring of 2019, will add to these findings.