A window into the care needs of patients with brain metastases

See Kim et al. in this issue, pp. 662–673.

Although the most frequent type of brain tumor, a diagnosis of brain metastases often does not receive the same type of multidisciplinary neuro-oncologic care as glioma. Today, many treatment options require consideration of multiple factors to predict benefit or toxicity. For patients/caregivers, it can be daunting to decide on a management strategy based on their preferences especially in the setting of variability in physician practice or opinion. Furthermore, the value of care provided for brain metastases from the patients’ perspective is not well defined.

In this issue, Kim et al provide some initial insight into the current state of brain metastases care in the United States from the perspective of relevant stakeholders.¹ By surveying patients with brain metastases, caregivers, and physicians, they collected information on unmet needs of patients/caregivers, physician management patterns, and suggestions to improve care. Relevant findings include a discordance between patient/caregiver and physician perceptions on topics discussed and the needs for more information surrounding the diagnosis. Many patients made treatment decisions without clear understanding of potential outcomes while only 17.5% of patients saw a palliative care physician. Treatment recommendations differed between private practice and academic physicians, with the latter more likely to consider clinical trials. The study also revealed the widespread perception that the federal government should engage in more comprehensive and multifaceted interventions such as research, education, awareness, and support for patients with brain metastasis.

Most findings are recognizable in clinical practice, but this survey is the first to assess the care needs from the patients’, caregivers’, and physicians’ perspective with results that have potential implications for clinical care, research, and health care policy.

For clinical care, findings emphasize the need for better communication provided by physicians to patients/caregivers about prognosis and potential benefits/toxicity associated with brain metastases-directed treatment. Patients receive treatments that may not add value to their care, like whole-brain radiation therapy for patients with poor functional status. In other scenarios, patients may not be offered valuable elements of care, such as a palliative care referral.

This survey identified the underutilization of palliative care in the management of brain metastases. Another study associated early involvement of palliative care in the treatment of brain metastases with improved survival and decreased futile utilization of resources.² Because physicians have difficulty accurately estimating survival of patients with brain metastases,^3,4 patients may have an unrealistic view of their prognosis after their initial consultation for treatment. The inclusion of palliative care may help clarify the goals of care and potential benefit of treatment allowing patients/caregivers to make informed treatment choices. Palliative care is an indispensable component of any multidisciplinary brain metastases program, and its utilization should be tracked as a quality measurement.⁵

In this survey, participation in a clinical trial was the least recommended choice for patients with brain metastases. This could be because of lack of available clinical trial options to choose from. At the time of writing this editorial, ClinicalTrials.gov had 106 actively accruing trials for brain metastases. This is in comparison to more than 5000 clinical trials available for breast cancer. We will never get closer to identifying better treatment for this challenging disease without equity in the realm of clinical trial availability. In the absence of curative treatment, studies seeking to mitigate side effects related to brain metastases-directed therapies are also necessary. The field of oncology has a long way to go to lessen the paucity of clinical trial opportunities for patients with brain metastases.

A multidisciplinary group does not generally care for patients with brain metastases; consequently, care may be inconsistent between providers, disciplines, and institutions. An interesting finding in this survey is the differences in treatment recommendations between academic and nonacademic physicians. A retrospective study found that patients with brain metastases treated at an academic facility had significantly improved survival than those treated in a nonacademic facility, and that the type of facility correlated with social determinant disparities.⁶ A suggestion to improve the quality and consistency of care is to have a dedicated, multidisciplinary team responsible for the whole cycle of brain metastases care.⁷ To help guide patients, caregivers, and brain metastases programs with consistent treatment decisions it will be necessary to assess performance by benchmarking outcome measurements.⁵ Research in population sciences is required to identify the barriers for consistent and coordinated interdisciplinary brain metastases management and address care disparities.

This study has significant shortcomings that limit the generalization of the results to all patients with brain metastases. Only 4% of patients contacted responded to the survey. Important characteristics of the patients, like the primary cancer, the type of treatment received, and where they were in the course of the disease are lacking. Therefore, the patients surveyed may have been a selected nonrepresentative group (eg, few patients who were asymptomatic or too sick to respond to the survey were included). The absence of matching of patients, caregivers, and physicians is a weakness if trying to identify the differences in perception from these 3 groups on the same situation. Because 96% of the physicians responding to the survey were medical oncologists, the perspective of the other disciplines (radiation oncology, neurosurgery, neuro-oncology, and palliative care) necessary for multidisciplinary care is lacking. Despite these limitations, by providing rigorous data, this work is a significant contribution to initiate the quest to improve brain metastases care.

The picture painted by this survey is that the current care of patients with brain metastases is deficient, inconsistent, and fractionated; it is an area ripe for opportunities for improvement. Ultimately, the management of brain metastases should be a team endeavor driven by shared decision making based on outcomes of relevance for the individual patient. This study provides a glimpse of some of the gaps in care that if addressed may improve the quality and value of the care from all stakeholders’ perspective. We are hopeful this important work will pave the way for subsequent studies that provide a more comprehensive assessment of the care needs and identify strategies that will improve the experience and outcomes of patients with brain metastases.

Conflict of interest statement. None declared.