A Black patient with metastatic breast cancer explained that the results of the survey show that more work must be done by all stakeholders to increase the participation in clinical trials to accurately assess treatments in diversified populations.
Although Black patients with metastatic breast cancer have the highest death rate and shortest survival outcomes when compared with other racial and ethnic groups in the United States, they are far less likely to be included in clinical trials that investigate newer treatments, according to findings that were presented during a press conference for the 2022 American Society of Clinical Oncology Annual Meeting.
Findings from a recently completed survey demonstrated that although 83% of Black patients with metastatic breast cancer would be interested in participating in clinical trials, only 40% reported their provider having a conversation with them about a trial.
The results of the survey, which were presented during a press briefing ahead of the 2022 ASCO Annual Meeting, show that action needs to be taken to address these barriers and ensure more Black patients with metastatic breast cancer are included in clinical trials, according to Stephanie Walker, a patient living with metastatic breast cancer who led this survey.
Walker, who is Black, said that only when a trial population represents the diversity of the general population can oncologists truly evaluate how a treatment works across different populations.
The purpose of the survey, which is a part of the BECOME initiative, was to better understand the barriers Black patients with metastatic breast cancer face in regard to participating in clinical trials. It was administered via social media, as well as by members of the Metastatic Breast Cancer Alliance and included 424 patients with metastatic breast cancer, 102 who self-identified as Black.
Black respondents trust and satisfaction rates with their oncology team were high, above 90%, and 83% of Black respondents were somewhat or very likely to consider participation in a clinical trial. However, 40% reported that their care team had not discussed clinical trials with them.
Additionally, Black respondents were more likely than non-Black respondents to believe unstudied treatments may be harmful (57% versus 31%) and were less likely to trust trials (73% versus 91%).
Other reasons for not participating in a clinical trial included worry about side effects (73%) and effectiveness (63%), as well as logistics such as travel and added cost.
Black respondents were also less likely than non-Black respondents to trust that people of all race and ethnicities would be given fair treatment in a trial (32% versus 56%) and would be more motivated to participate if there were assurance people of their race would benefit (83%).
Furthermore, Black respondents were more likely than non-Black respondents to value information on clinical trials if given by someone who is same race or ethnicity (67% versus 10%), has had breast cancer (73% versus 44%) or metastatic breast cancer (73% versus 51%).
As noted in the results, Black patients with metastatic breast cancer are willing to participate in clinical trials; however, more must be done to increase their participation. Walker said taking action to better inform patients, inspire their trust, ensure access to clinical trial and address their concerns could increase this participation.
As noted in the results, Walker said that bringing in people who have been through a similar journey with race and breast cancer could help inspire this participation and trust.
“We want to inspire Black people with metastatic breast cancer to participate in these clinical trials,” Walker explained. “So, in order for that to happen, we trust people that look like us, that are from the same racial or ethnic background, those that have … participated in clinical trials, those that have had breast cancer or metastatic breast cancer.”
Walker added that clinical trials are often held at teaching/university-based cancer centers, and not community-based cancer centers where some of these patients may be receiving treatment; therefore, they don’t know about them nor do they have access to them, another barrier Black patients with metastatic breast cancer may face.
“To address the concerns that we have, you need to communicate clearly about the issues and worries that metastatic breast cancer 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 (them) will benefit,” Walker said.
Additionally, Walker said all stakeholders have a role to play in increasing participation. This includes expanding the survey-respondent base, meaning investigators hope to reach a broader group of people to better represent the Black patient experience. Members of the BECOME initiative will also meet with other groups to share results and create strategies to improve care, she said.
Other initiatives that could increase participation, Walker added, include improved patient education, training healthcare providers on effective patient communication and helping patients find and access clinical trials.
She highlighted that healthcare providers should be educated on how to communicate with Black patients because they go through a different experience, and they need to better understand those who are in rural communities might not have the access they would need to participate in a clinical trial.
“You need to know where we are coming from. You need to know what we go home to everyday isn’t always what you believe it be, as the white patient has all the support and resources that they need,” she concluded.
Walker S, Carlson M, White C et al. Increasing Black patient participation in metastatic breast cancer clinical trials: The BECOME (Black Experience of Clinical Trials and Opportunities for Meaningful Engagement) project. Presented at the 2022 ASCO Annual Meeting. May 26, 2022.