Black patients with metastatic breast cancer often not informed of clinical trials
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Most Black patients with cancer reported a somewhat or very high likelihood of considering clinical trial participation, yet many had not been informed of the opportunity to enroll onto a clinical trial, study results showed.
Stephanie Walker, BSN, project lead on the Black Experience of Clinical Trials and Opportunities for Meaningful Engagement (BECOME) project for the Metastatic Breast Cancer Alliance, presented the findings of the patient-led research initiative Thursday during a virtual press briefing ahead of ASCO Annual Meeting.
“Among all patients with breast cancer, 15% are Black, and of those only 4% to 6% participate in clinical trials. Trial participants [must] reflect the diversity of the general population and once that occurs, the oncologist will be able to understand how an oncology drug works across subtypes,” Walker said.
Rationale and methods
Walker and colleagues conducted a literature review of 34 articles associated with Black patient participation in clinical trials, and they additionally conducted 31 virtual interviews among individuals living with metastatic breast cancer, clinicians who treat patients with breast cancer, hospital administrators or others to identify relevant issues, concerns, motivations, barriers and experiences with breast cancer. Researchers used data gathered from the literature reviews and responses from the interviews to inform questions for a survey of patients with metastatic breast cancer as part of the BECOME project.
Key findings
Among the 424 survey respondents, 102 (24%) self-identified as Black.
Overall, Black respondents reported a 90% trust and satisfaction level with their oncology care team and 83% were somewhat or very likely to consider clinical trial participation. However, 40% of Black respondents reported their care team did not discuss clinical trial enrollment with them compared with 33% of non-Black respondents.
Black respondents also appeared more likely to report concerns about adverse effects (73%) and treatment effectiveness (63%). They were also more likely to believe that unstudied cancer treatments may be harmful (57% vs. 31%) and less likely to report trust in clinical trials (73% vs. 91%) and trust that people of all races/ethnicities receive fair treatment in trials (32% vs. 56%).
Of note, a higher percentage of Black respondents indicated they valued receiving clinical trial information from someone of their same race/ethnicity (67% vs. 10%), who had breast cancer (73% vs. 44%) or metastatic breast cancer (73% vs. 51%) or who participated in a clinical trial (72% vs. 48%). Black respondents were also more likely to be motivated to participate in clinical trials to ensure that people of their same race/ethnicity could benefit (83% vs. 51%).
Looking ahead
Members of the BECOME initiative plan to meet with other groups that have conducted surveys focused on Black patients with metastatic breast cancer to share results and identify strategies for improved care, according to Walker.
“All stakeholders have a role to play. We want to expand the survey respondent base and in future studies, we hope to reach a broader group to better represent the Black patient experience,” Walker said. “We also want to increase clinical trial enrollment among Black patients, and some of the activities that will help do this are patient education and effective communication among clinicians for the Black population.”
Perspective
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The results reported by Walker and colleagues left me frustrated yet hopeful.
The frustration stems from the findings that demonstrated that although Black respondents with metastatic breast cancer had a strong interest in clinical trial participation, 40% of these patients did not have clinical trials discussed by their oncology team. This, unfortunately, is consistent with previous data that have shown Black patients participate in clinical trials at lower rates than the rest of the population.
However, my optimism stems from the study results highlighting areas that oncology care and clinical research teams should focus on to improve Black patient engagement with clinical trials, including greater discussions regarding toxicities and efficacy of therapies, as well as the impact/benefit of clinical trials to society. By pursuing strategies tailored around these findings, there hopefully will be increased accrual of Black patients and other underrepresented groups to cancer clinical trials. This is imperative, as the value of clinical trials and their results are diminished if they do not represent the patient populations we serve.
What should be done in response to these findings? First, we must recognize that underrepresentation in clinical trials is a widespread issue throughout the United States and that, in order to improve enrollment of Black patients and other underrepresented groups, we must engage patients, patient advocates, research teams and clinical trialists to rethink clinical trials — from design to enrollment to follow up — in order to address barriers to enrollment.
At the institutional level, the first step is to assess how we are doing at enrolling underrepresented populations compared with the patient population served at the institution. Subsequently, we must look at what steps have been taken to address the key issues identified in the study, which include:
- Are we discussing clinical trials with all eligible patients and, if not, what are the barriers? Are Black patients and those in other underrepresented groups being offered clinical trials at the same rate as the rest of the population?
- How are we discussing clinical trials and potential concerns regarding toxicity of therapies, efficacy of therapies and how the information obtained will be used to benefit society?
- What steps are being performed to build trust with patients and ensure equity in care?
- What are we doing to ensure that research teams reflect the diversity of our patient populations?
Importantly, this cannot be a one-time exercise but something that becomes a core principle of clinical trial development and operations such that institutions, as well as those that fund clinical trials, continue to evaluate barriers and opportunities to improve. Such a process will allow for the development of strategies and best practices, with the ultimate goal being that our clinical trial populations reflect our patient populations more accurately and that all patients are provided equitable access to clinical trials.
Perspective
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Julie R. Gralow, MD, FACP, FASCO
The BECOME survey showed Black respondents with metastatic breast cancer had generally high levels of satisfaction with their health care team and a high likelihood of consideration of participation in a clinical trial. However, many Black respondents reported that no one on their care team had ever discussed clinical trials. We need to understand where this gap occurs in the system.
The BECOME project identified several actionable steps to enhance the likelihood of participation of Black patients with metastatic breast cancer in clinical trials, including increasing awareness and also the way in which information is presented and by whom. Also, building trust, addressing concerns and helping find access to trials.
In 2020, ASCO and ACCC [Association of Community Cancer Centers] launched a collaboration to increase racial and ethnic diversity in cancer treatment trials. The pilot testing of this collaboration included more than 70 research sites, both academic and community, across the U.S., and the pilot is now complete. The assessment and training will be made available free of no charge to the wide cancer community later this summer and will be published. As part of the collaboration, ASCO and ACCC released recommendations that detail specific actions to engage the entire cancer clinical trial ecosystem in expanding the participation of underrepresented individuals in research that advances progress against cancer.
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Walker S, et al. Abstract 1014. Scheduled for presentation at: ASCO Annual Meeting; June 3-7, 2022; Chicago.
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