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380 "If You Don’t Trust Your Doctor That Much...You’d Feel Less Confident Doing a Research Study": Factors Influencing Black Patient Participation in Hematology Trials

Program: Oral and Poster Abstracts
Type: Oral
Session: 905. Outcomes Research—Lymphoid Malignancies: Patient Representation and Equity in Hematologic Malignancies
Hematology Disease Topics & Pathways:
Clinical Practice (Health Services and Quality), Diversity, Equity, and Inclusion (DEI)
Saturday, December 10, 2022: 4:15 PM

Shakira J. Grant, MBBS1,2, Milenka Jean-Baptiste, MPH3*, Mykela Moore, BA3*, Jiona Mills, BSPH3*, Lauren Bates, MA4*, Sascha A. Tuchman, MD, MHS1,2 and Paul Mihas, MA5*

1Lineberger Comprehensive Cancer Center, The University of North Carolina at Chapel Hill, Chapel Hill, NC
2Department of Medicine, Division of Hematology, The University of North Carolina at Chapel Hill, Chapel Hill, NC
3Gillings School of Global Public Health, The University of North Carolina at Chapel Hill, Chapel Hill, NC
4Department of Allied Health Sciences, The University of North Carolina at Chapel Hill, Chapel Hill, NC
5Odum Institute for Research in Social Sciences, The University of North Carolina at Chapel Hill, Chapel Hill, NC

Background

Racial disparities exist in incidence and survival from hematological cancers. These differences are driven by multiple factors, including disease biology and access to high-quality cancer care (e.g., enrollment in a clinical trial). Black persons constitute 5-7% of participants in therapeutic cancer clinical trials (Bhatnagar et al. 2017, S. Al Hadidi et al. 2020, S. Al Hadidi et al. 2022), despite accounting for 14% of the US population. While previous studies have broadly focused on understanding factors that underpin that disparity in clinical trials, very few have focused explicitly on populations with hematological cancers. Further, research evaluating the perspectives of hematologists on factors that influence clinical trial enrollment for the Black population remains limited.

The objective of this study was to understand factors that influenced Black participant enrollment in hematology-focused clinical trials by examining the perspectives of Black patients with multiple myeloma and their hematologists.

Methods

Between August 2021-January 2022, hematologists were recruited to participate in single semi-structured 60-minute virtual interviews, while patients diagnosed with multiple myeloma were asked to participate in focus group discussions (FGDs) lasting up to 90 minutes via videoconferencing. Through the Sort and Sift, Think, and Shift approach (Maietta et al. 2021), analytic memoing and diagramming of key quotations were used to assess topics and identify larger conceptual themes. We tabled and grouped themes, topics, and associated quotations at multiple levels using the National Institute on Minority Health and Health Disparities Research framework. Topics and themes from FGDs and hematologist interviews were then distilled into key claims.

Results

We conducted 6 FGDs with 23 patients and 13 semi-structured interviews with hematologists. Hematologists perceived trust at multiple levels (e.g., patient-provider, patient-health care system) as an influential determinant of Black patients' enrollment in clinical trials (Table 1). Factors that fostered patient-hematologist trust included the length of the relationship, use of transparent and empathic communication, and shared racial identities of patients and hematologists. For patients, trust in the hematologist, health care system, and proposed trial intervention were determinants of whether Black patients enrolled in a clinical trial. Patients also emphasized the importance of hematologists acknowledging the historical events that led to the intentional harm of Black persons engaged in research-related activities and recommended additional efforts to foster shared medical decision-making. Some hematologists perceived clinical trial discussions as potentially harmful when building trust in their patient relationships. Hematologists also considered patient context--such as geographic location, socioeconomic challenges, and health literacy along with study eligibility criteria--when deciding to offer a clinical trial (Figure 1). Hematologists also viewed lack of time, trial availability, and adequate clinical trial infrastructure as barriers to discussing and enrolling Black patients in clinical trials.

Conclusion

Black patients and hematologists perceived trust at multiple levels as critical to enhancing the enrollment of Black participants in hematology-focused cancer clinical trials. Additionally, hematologists’ perceptions about patients, including the additional burdens associated with clinical trial participation, also impacted whether or not Black patients are given the opportunity to participate in a clinical trial. Addressing disparities in clinical trial enrollment among Black participants requires multilevel interventions such as 1) fostering patient-clinician relationships, 2) increasing clinical trial availability and partners in community-based settings, 3) providing support to overcome logistical barriers, 4) acknowledging and finding strategies to address physician biases.

Disclosures: Tuchman: Prothena: Honoraria; Janssen: Honoraria; Shattuck Labs: Honoraria.

*signifies non-member of ASH