Black patients with metastatic breast cancer (MBC) are very willing to participate in clinical trials; however, 40 percent of respondents to a recent survey report that no one on their care team had ever discussed clinical trials with them.
Among U.S. racial/ethnic groups, Black patients with breast cancer have the highest death rate and shortest survival. Approximately 15 percent of patients with cancer in the U.S. are Black, while only 4-6 percent of clinical trial participants are Black, stated lead author Stephanie Walker, RN, project lead on the BECOME (Black Experience of Clinical Trials and Opportunities for Meaningful Engagement) initiative for the Metastatic Breast Cancer Alliance, a collective of cancer nonprofits, pharmaceutical, and biotech industry members, along with individual patient advocates, many of whom are living with metastatic breast cancer. Walker has been living with MBC for 7 years.
"The objectives of this patient-led research initiative were to understand the barriers that participation of Black people with MBC run into and to identify actions to increase participation in these clinical trials," said Walker at the 2022 American Society of Clinical Oncology (ASCO) Annual Meeting (Abstract 1014). The survey included 425 adults living with MBC, including 102 self-identifying as Black.
First, the researchers conducted a literature review of 34 articles related to Black patient participation in clinical trials. They also conducted 31 virtual interviews, including those patients who are living with MBC, clinicians involved in breast cancer treatment, or 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
The survey of MBC patients showed the following results:
* Some 83 percent of Black respondents were somewhat or very likely to consider trial participation.
* Forty percent of Black respondents said their care team had not discussed trial enrollment compared to 33 percent of non-Black respondents.
* One reason 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 MBC (73% vs. 51%), or who has been in a 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%).
To ensure access to Black people, clinicians need to consider important barriers to clinical trial participation. "One is logistics-how far they had to travel to participate in a clinical trial was a concern. Also, finding the clinical trials. We have these clinical trials that are listed at these centers, but people that get their cancer care in community-based centers often don't know about the clinical trials that are held in the teaching/university-based cancer centers. Also, we have expenses. The financial toxicity of dealing with MBC is overwhelming as it is. And then to have to throw in the expense of a clinical trial, that frightens us because of adding increased cost," said Walker.
"To address the concerns that we have, you need to communicate clearly about the issues and worry that MBC patients have. You have to understand that some of the compelling motivation for Black patients to participate in clinical trials is to ensure that people like me will benefit from this," she noted.
ASCO-ACCC Collaboration
At the press briefing, ASCO Chief Medical Officer & Executive Vice President Julie R. Gralow, MD, Professor of Breast Cancer and Director of Breast Medical Oncology at the University of Washington/Seattle Cancer Care Alliance, noted that 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 designed to address one of the greatest barriers to people participating in clinical trials.
"We saw this in the BECOME trial; the trials are not routinely being offered by clinicians to eligible patients," said Grabow. 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 (2022; doi: 10.1200/JCO.22.00754).
Mark L. Fuerst is a contributing writer.