A survey of patients with metastatic breast cancer found that 83% of Black respondents were somewhat or very likely to consider clinical trial participation; however, 40% of those respondents reported that they had not been informed by their care team about the opportunity to enroll in a trial. The research will be presented by Walker et al at the 2022 ASCO Annual Meeting (Abstract 1014).
Among U.S. racial/ethnic groups, Black people with breast cancer have the highest death rate and shortest survival. Approximately 15% of patients with cancer in the United States are Black, while only 4% to 6% of clinical trial participants are Black.
About the Study
Researchers did a literature review of 34 articles related to Black patient participation in clinical trials. They also conducted 31 virtual interviews, including patients living with metastatic breast cancer, clinicians involved in breast cancer treatment, hospital administrators, and others, to identify relevant issues, concerns, motivations, barriers, and experiences in dealing with the disease. The messages from the literature review and the informant interviews were then used to inform the survey questions.
Key Findings
This survey of patients with metastatic breast cancer, which is part of the BECOME (Black Experience of Clinical Trial and Opportunities for Meaningful Engagement) initiative, showed that:
- Black respondent trust and satisfaction with their oncology care team was over 90%, while 83% were somewhat or very likely to consider trial participation.
- Forty percent of Black respondents said that their care team had not discussed trial enrollment compared to 33% of non-Black respondents.
- One of the reasons Black respondents declined to participate in a trial was concerns about side effects (73%).
- Black respondents were more likely than non-Black respondents to be concerned that unstudied treatments may be harmful (57% vs 31%).
- Black respondents were less likely than non-Black respondents to indicate they trust trials (73% vs 91%) and trust that people of all races/ethnicities get fair treatment in trials (32% vs 56%).
- Black respondents were more likely than non-Black respondents to value receiving trial information from someone of the same racial/ethnic identity (67% vs 10%), who has had breast cancer (73% vs 44%) or metastatic breast cancer (73% vs 51%), or who has participated in a clinical trial (72% vs 48%).
- Black respondents were more likely than non-Black respondents to be motivated to participate in clinical trials to ensure people with their racial or ethnic identity would benefit (83% vs 51%).
“This study was initiated in 2019 and led by a very special and ardent advocate of inclusivity in breast cancer trial enrollment. Sadly, she passed away from metastatic breast cancer, but we all strive to continue her efforts by bringing the patient voice and authenticity of advocacy to our work so that we can demonstrate the impact that patients can have on the clinical trials process,” said lead study author Stephanie Walker, RN, project lead on the BECOME initiative for the Metastatic Breast Cancer Alliance, a collective of cancer nonprofits, pharmaceutical and biotech industry members, and individual patient advocates, many of whom are living with metastatic breast cancer.
Next Steps
The survey respondents tended to be highly educated (over 80% of respondents held an advanced degree) with high socioeconomic status (about half of respondents had annual household incomes of $50,000 or higher) and access to social media. Patients not connected to social media, or those who received their care in community cancer centers, were not well represented in the survey, factors which the investigators hope to address in future studies.
Members of the BECOME initiative will meet with other groups who have recently performed surveys focused on Black patients with metastatic breast cancer to share results and identify strategies for improved care.
The investigators hope to incorporate steps into the clinical trial enrollment processes to increase Black patient participation, including:
- Enhancing clinical trial awareness by informing patients, increasing education, training health-care providers to deliver patient-friendly information in an unbiased manner, and providing messaging from people of shared racial/ethnic identities and health experiences.
- Building trust through clear communication.
- Addressing concerns about side effects, effectiveness, harm, and fair treatment.
- Helping patients find and access trials.
Perspective
“These study findings reinforce the important role that health-care teams have in boosting participation in clinical trials, particularly for Black patients living with metastatic breast cancer,” said ASCO Chief Medical Officer & Executive Vice President Julie R. Gralow, MD, FACP, FASCO.
ASCO-ACCC Collaboration
In 2020, ASCO and the Association of Community Cancer Centers (ACCC) launched a collaboration to increase the diversity of racial and ethnic populations in cancer treatment trials. A key component of this initiative included testing a research site self-assessment tool and implicit bias training program that are designed to address one of the greatest barriers to people participating in clinical trials: trials are not routinely being offered by clinicians to eligible patients. With the pilot testing involving more than 70 research sites across the United States now completed, the assessment and training will be made available for free public access in the summer of 2022.
As part of this collaboration, ASCO and ACCC recently issued recommendations, published in the Journal of Clinical Oncology, detailing specific actions that would engage the entire cancer clinical trial ecosystem in expanding the participation of underrepresented individuals in research that advances progress against cancer.
Disclosure: This study received funding from the Metastatic Breast Cancer Alliance. For full disclosures of the study authors, visit coi.asco.org.
