Faith Mutale, CRNP, discusses the paradigm shift needed in oncology to address clinical trial enrollment hesitancy among African American patients with lung cancer.
African American patients with cancer are more likely to enroll in a clinical trial if their primary oncologist is one of the trial investigators, according to a presentation from the 6th Annual School of Nursing Oncology meeting. 1 Moreover, findings showed that African American patients with lung cancer are just as, if not more, knowledgeable about clinical trial enrollment as White patients with lung cancer, and highlighted that 1 key barrier to enrollment between the 2 groups may be an issue of trust.
“The way [respondents] expressed themselves was telling in terms of the trust for the physician,” Faith Mutale, CRNP, of the Abramson Cancer Center at the University of Pennsylvania, who presented the findings during the meeting, said in an interview with Oncology Nursing News®. “Some of the participants would say, ‘I don’t trust the medical system, but I trust my physician because they’ve shown interest in my individual well-being.’ ”
Understanding the role that trust plays in clinical trial enrollment is crucial for efforts to diversify research, Mutale added, particularly among the African American community, where there has been a history of abuse and misinformation.
Less than 5% of patients in the general population with cancer enroll in clinical trials.2 Among African American patients with cancer, enrollment rates are even fewer, even though African Americans comprise about 13% of the United States population.3 For other minorities, enrollment numbers are even lower.
The reason for lower enrollment rates is multifaceted, Mutale said. However, obtaining a better understanding of what motivates these patients to enroll was part of the impetus behind a clinical project that Mutale helped launch at her institution.
The study looked at 2 different sites within the Matrix Cancer Centers, comprising different ethnic populations. One center has a mixed racial population and the other primarily treats African American patients. The cohort size was 65 patients, and the primary end point was to explore clinical trial knowledge and factors that influence attitudes and willingness to enroll onto a clinical trial among African American patients with lung cancer using a survey.
“We were going into this project with several assumptions, one of which was [that] participants from the primary site were more likely to have clinical trial knowledge and interest to enroll, as opposed to the affiliate site,” Mutale said. “But that wasn’t [the case].”
How can oncology nurses address this lack of trust?
According to Mutale, nurses will be at the forefront of bridging this barrier to care. Specifically, nurse navigators may play a role in helping keep patients both informed, and well-advocated, as they navigate the process of clinical trial enrollment.
“Nurse navigators have the ability to inform or educate patients about what’s available,” Mutale explained. “Patients may not be very comfortable discussing these things upfront, particularly after the first visit. However, they may then go the navigator and talk about what [clinical trials] are and what this may mean for them.”
Alongside nurse navigators, social workers have the potential to make patients feel both at ease, and well supported throughout their cancer journey, Mutale added. “Some of our patients just felt very comfortable talking to someone who looked like them,” she said, emphasizing that it’s not just the information that matters, but feeling as though your provider understands you and is invested in your well-being that is critical as well.
“In my experience, having a navigator and a social worker has always been very helpful. Their presence can [have] a calming effect in a nonthreatening way,” she said.
Overall, a paradigm shift is necessary in oncology, according to Mutale. At an institutional level, there is a need is a need to develop nurse-driven programs to combat disparities in clinical trial enrollment. There also needs to be a push for specific training for the role of the “clinical trial educator,” as Mutale calls them. “I coined this particularly nurses who are members of minority groups. Patients must feel and know that the providers interest goes beyond the trial but for each individual patient outcomes as well.”
Based on these findings from the phase 1 part of the study, investigators are now launching a phase 2 study.