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Nearly half of Black patients with metastatic breast cancer are never informed about clinical trial participation, despite the fact that most are open to the idea, according to a new survey.

Among more than 400 respondents surveyed, 40% of Black patients said they were not told about the possibility of enrolling in a clinical trial versus 33% of patients who identified as being of another race or ethnicity, reported Stephanie Walker, RN, of the Metastatic Breast Cancer Alliance in New York City.

But 92% of Black respondents said they were interested in learning about trials, and 83% said they were either "somewhat or very likely" to consider enrolling, she said during a press briefing ahead of the American Society of Clinical Oncology (ASCO) annual meeting.

Walker noted that roughly 15% of breast cancer patients in the U.S. are Black, and these patients carry the highest mortality rates, yet Black patients make up only 4-6% of trial participants.

The survey identified several barriers to trial participation that if addressed could bolster enrollment, said Walker, including concerns over treatments, trust issues, and worry over potential costs.

"The financial toxicity of dealing with metastatic breast cancer is overwhelming as it is, and to have to throw in the expense of a clinical trial -- that frightens us," said Walker, who is a metastatic breast cancer patient herself.

Nearly three-fourths of Black respondents cited possible side effects as a top concern, while nearly two-thirds said they were unsure about the effectiveness of treatments used in trials. Black respondents were more likely to be concerned that investigational therapies might be harmful (57% vs 31% for respondents of other race/ethnicities) and less likely to feel that trial participants would be treated fairly regardless of their racial background (32% vs 56%, respectively).

Other concerns raised by Black patients included difficulty locating trials (64%), worry over travel (47%), and not wanting too many appointments or tests (40%).

Not all patients have the same support system, said Walker. "You need to know where we are coming from, you need to know what we go home to every day."

The survey findings came from the BECOME (Black Experience of Clinical Trials and Opportunities for Meaningful Engagement) initiative, and included 424 respondents with metastatic breast cancer, 21% of whom identified as being Black. Participants were recruited through social media posts and emails from the Metastatic Breast Cancer Alliance, and most had received treatment at an academic center, said Walker.

Overall, 90% of Black respondents said they trusted and were satisfied with their oncologist and care team, but only 36% said they received as much information on trial participation from their team as they would like.

During the briefing, Julie Gralow, MD, chief medical officer at ASCO, said the next step will be to figure out why Black patients aren't offered the same opportunities for clinical trial enrollment compared with other groups.

"Are Black patients with metastatic breast cancer just more often not eligible for clinical trials?" said Gralow. "Are assumptions being made by the care team about the likelihood to be able to comply with protocol requirements, so they don't even present the option? Or are they not even being screened for trials at all?"

Gralow highlighted recently to increase diversity in clinical trials from ASCO and the Association of Community Cancer Centers, and said the survey contained several actionable findings to bolster trial participation, including "the way in which information is presented, and by whom."

Black patients were more likely to say they valued receiving trial information from someone who was of their same identity (67% vs 10%), who also had breast cancer (73% vs 44%), or who had participated in a clinical trial themselves (72% vs 48%). Also, 83% of Black respondents said they would be motivated to sign up for a trial if it would benefit other patients like them.

Walker said the next goals of the project will be to develop strategies, based on the survey data, to boost enrollment among Black patients, which could include patient education tactics, training healthcare providers in effective communication, and helping patients locate and access trial sites.

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