Religious beliefs, lack of trust could explain Black patients’ hesitancy to join cancer trials
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Spiritual beliefs and lack of trust in clinical research may influence Black individuals’ decisions about whether to participate in cancer trials, according to findings presented at American Society for Radiation Oncology Annual Meeting.
In the cross-sectional descriptive study, researchers identified 138 individuals who had undergone definitive radiation treatment for gastrointestinal, thoracic, gynecologic or head and neck cancers.
Investigators invited these individuals to participate in a clinical trial and asked them to complete a questionnaire adapted from two previously validated surveys.
Ninety-seven of the individuals invited to participate agreed. Researchers reported no differences in insurance status, education, employment status, cancer stage or cancer treatment between Black participants (30%) and non-Black participants (70%).
More than 90% of Black and non-Black participants indicated they trusted their oncologists. However, the questionnaires reviewed differences in several other assessments.
A higher percentage of Black individuals than non-Black individuals agreed with the statement that “God’s will determines illness and death” (55.5% vs. 10%; P = .001) and “God, not research, determines wellness” (59.1% vs. 11.6%; P <.001).”
A higher percentage of Black participants than non-Black participants agreed that research harms racial or ethnic minority individuals (20% vs. 0%; P <.001).
Moreover, one-third of Black participants indicated that research would provide information about their health that they would prefer not to know, compared with 4% of non-Black participants (P = .037).
A higher percentage of Black participants said they believed participation in research would not yield anything beneficial to them (20% vs. 2%; P = .038) or their communities (40% vs. 6%; P=.031).
“Unfortunately, practitioners are not regularly formally trained to have religious and spiritual conversations with patients,” Charlyn Gomez, a medical student at University of Maryland School of Medicine in Baltimore, told Healio. “I believe we can learn a lot from our palliative care colleagues in how to talk about these topics, and it is the responsibility of the principal investigator to take the lead. They should directly ask their patients how they plan on deciding whether they’d like to participate in research, in addition to asking about any religious background before the screening process.”
Healio spoke with Gomez about the motivations for the study, the implications of the findings, and the need to better understand and address the concerns of Black individuals in hopes of increasing diversity in clinical trial participation.
Healio: Prior to this study, what did evidence suggest about explanations for low clinical trial participation among Black individuals?
Gomez: The literature primarily reflected medical mistrust, lack of adequate recruitment strategies and burdensome participation requirements as the main reasons behind low enrollment of Black patients in clinical trials. This is a longstanding issue despite efforts from NIH.
Healio: What motivated you to conduct this study?
Gomez: I was motivated to join principal investigator Melissa Ana Liriano Vyfhuis, MD, PhD, in her study due to prior experience in increasing diversity in clinical research recruitment as a clinical trials coordinator at Georgetown University before medical school. As a member of an underrepresented group, I am acutely aware of how important it is for us to better understand how to equitably improve trial recruitment. Because we are in Baltimore, it is crucial for investigators to gain insight on the decision-making process of our Black patients.
Healio: How did you conduct the study?
Gomez: We distributed an observational paper survey at University of Maryland Medical System and Baltimore Washington Medical Center to patients in the clinic waiting room who had complete curative radiation treatment up to 1 month to 5 years from completion.
Healio: Did the findings surprise you?
Overall, the psychosocial factors influencing Black patients in trial participation were not surprising and aligned with Dr. Vyfhuis’ first study, which was modeled in a similar fashion focusing on women treated for breast cancer. The evidence suggesting decreased mistrust in our patient cohort may counter what is known in larger studies and those performed in less diverse geographic regions and institutions, which may lack experience with different patient groups.
Healio: What are the potential implications of this study?
Gomez: Our findings can provide guidance for research teams across all medical specialties. As demonstrated, spiritual factors play an active role in Black patients’ decision-making process regarding clinical trials. Thus, all team members should be well-equipped to have conversations on this complex topic.
Oncologists should know to ask whether the patient will consult a spiritual or religious leader or if their family will be involved. This will show patients that clinicians have some understanding of their experiences and can strengthen rapport.
Healio: Do you plan to study this further?
Gomez: We plan to continue to recruit until we survey approximately 300 patients. We are currently at over 230 patients, which is more since our original ASTRO submission. We also will host focus groups with survey participants. This will allow us to ask follow-up questions and capture details we could not in the survey. One of main questions we have yet to answer is what these patients would like to see from research teams during the recruitment and screening process, including teams engaging community religious leaders.
Healio: Is there anything else you’d like to mention?
Gomez: Our findings may be relevant to physicians across different specialties, but more research is needed to understand the decisions of patients with different pathologies, as well as different racial and ethnic identities.
Reference:
- Gomez C, et al. Abstract 215. Presented at: ASTRO Annual Meeting; Sept. 29-Oct. 2, 2024; Washington, D.C.
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