Background The development of brain metastases (BM) is one of the most feared complications of cancer due to the substantial neuro-cognitive morbidity and grim prognosis. In the past decade, targeted therapies and checkpoint inhibitors have demonstrated promising intracranial response rates for tumors of multiple histologies. As overall survival for these patients improves, there is a growing need to identify issues surrounding patient survivorship and to standardize physician practice patterns for these patients. To date, there has not been an adequate study to specifically explore these questions of survivorship and practice standardization for patients with advanced cancer and BM. Methods Here, we present results from a cross-sectional survey in which we analyze responses from 237 patients, 209 caregivers, and 239 physicians to identify areas of improvement in the clinical care of BM. Results In comparing physician and patient/caregiver responses, we found a disparity in the perceived discussion of topics pertaining to important aspects of BM clinical care. We identified variability in practice patterns for this patient population between private practice and academic physicians. Many physicians continue to have patients with BM excluded from clinical trials. Finally, we obtained patient/physician recommendations on high-yield areas for federal funding to improve patient quality of life. Conclusion By identifying potential areas of unmet need, we anticipate this wealth of actionable information will translate into tangible benefits for both patients and caregivers. Future studies are needed to validate our findings.
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.
The development of brain metastases (BM) is one of the most feared complications of cancer due to the substantial neuro-cognitive morbidity and grim prognosis. In the past decade, targeted therapies and checkpoint inhibitors have demonstrated remarkable intracranial response rates for tumors of multiple histologies. As overall survival for these patients improves, there is a growing need to identify issues surrounding patient survivorship and to standardize physician practice patterns for these patients. To date, there has not been an adequate study to specifically explore these questions of survivorship and practice standardization for patients with advanced cancer and BM. Here, we present results from a cross-sectional survey in which we analyze responses from 237 patients, 209 caregivers, and 239 physicians to identify areas of improvement in the clinical care of BM. In comparing physician and patient/caregiver responses, we found a disparity in the perceived discussion of topics pertaining to important aspects of BM clinical care. We identified variability in practice patterns for this patient population between private practice and academic physicians. Many physicians continue to have patients with BM excluded from clinical trials. Finally, we obtained patient/physician recommendations on high-yield areas for federal funding to improve patient quality of life. Therefore, by identifying potential areas of unmet need, we anticipate this wealth of actionable information will translate into tangible benefits for both patients and caregivers. Future studies are needed to validate our findings.
e14004 Background: Brain metastases (BM) is one of the most feared complications of cancer due to substantial neurologic sequalae, neuro-cognitive morbidity and grim prognosis. In the past decade, targeted therapies and checkpoint inhibitors have resulted in meaningfully improved overall survival for a minority of these patients. Accordingly, there is a growing need to identify issues surrounding patient survivorship and to standardize physician practice patterns for these patients. To date, there has not been a well-conducted formal study to specifically explore these questions of survivorship and practice standardization for BM patients. Methods: Here, we present results from a cross-sectional survey in which we analyzed responses from 237 BM patients, 209 caregivers, and 239 physicians. Surveys contained questions about BM symptoms, discussion of BM diagnosis by the clinician, psychosocial concerns, available treatment options for BM, BM patient advocacy resources, and BM-specific clinical trials. Results: Our survey revealed compelling findings about current care of BM patients. There were discrepancies in the perceived discussion of the implications of the diagnosis of BM, from the patient/caregiver and physician perspective. Important topics, such as prognosis and worrisome symptoms, were felt to have been discussed more frequently by physicians than by patients or caregivers. In our physician survey, private practice physicians, compared to academic physicians, were significantly more likely to recommend whole brain radiotherapy (61.1 vs 39.7%; p = 0.009). Participation in a clinical trial was one of the least recommended treatment options. Many physicians (59.1% private; 71.9% academic) stated that BM patients in their care are denied participation in a clinical trial, specifically due to the presence of BM. The consensus among physicians, patients and caregivers was that the highest yield area for federal assistance is increased treatment and research funding for BM. Conclusions: Our hope is that these findings will serve as a basis for future quality improvement measures to enhance patient-physician communication and patient well-being, continuing medical education activities detailing latest advances in BM for oncologists, and lobbying efforts to the federal government in prioritizing BM research, clinical trials, and patient survivorship.
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