Abstract B096: Patient, Provider, and Advocate Perspectives on Factors that Impact Participation of Black Women in Breast Cancer Clinical Trials
Authors: Carnahan Leslie R. , Cohn Eliza B. , Mersha Tigist , Hippalgaonkar Neha , Nguyen Ryan , Salum Kauthar , Waite Ana Williams , Sandoval Christen , Coleman Lolita , Brent Beulah , Thomas Paris , Khosla Paramjeet , Hoskins Kent F. , Henderson Vida 
Published: September 2024

Abstract
Background: Black women are more likely to present with advanced stage disease and to die following a breast cancer (BC) diagnosis compared with women from other racial and ethnic groups. This persistent health inequity is in part driven by underrepresentation in clinical trials (CTs), as well as structural and social drivers of health. Multi-level factors impact patients’ decision to enroll on a cancer CT. Objective: The goal of the FOR ME (Fostering Opportunities in Research through Messaging and Education) study is to develop, optimize, and test a narrative web-based video intervention for Black women diagnosed with BC to promote shared decision making and CT participation. Here, we report findings from the development phase, wherein we engaged Black women with BC, oncologists and CT office staff, and cancer advocates. Our objective was to identify cross-cutting and unique themes concerning barriers and motivating factors to CT participation, intervention priorities, and to understand lived experiences to enhance authenticity and to inform video content. Methods: Guided by community engaged research approaches, we used multiple qualitative methods, including story circles and 1:1 interviews. We used thematic analysis and inductive and deductive coding approaches. Data analysis for each group followed the same approach: we annotated a subset of transcripts, compiled the annotations into a preliminary codebook, and conducted inter-coder reliability to improve quality and refine the codebook. Finally, we used Dedoose to analyze quotations and code co-occurrences, application frequencies, and relationships. We examined cross-cutting and unique themes during data collection and analysis. Results: In total, 38 Black women with BC participated in interviews and story circles, ranging in age from 27-75 years (M=59, SD =12); about 27% were currently receiving BC treatment and 27% had prior CT participation. Oncologists (n=16) and CT office staff (n=4) reported having on average 11.6 and 9.5 years of CT experience, respectively). Finally, 15 cancer advocates completed interviews, of whom 73% identified as Black women; 87% reported that the organization they were involved with connected patients to or provided education about CTs. Several cross-cutting themes were identified, including: 1) Acknowledgement of time, financial, and logistical burdens of CT participation; 2) The impact that current and historical racism, discrimination and mistreatment has had on CT enrollment for Black BC patients; 3) A lack of accessible CT information poses significant challenges for health literacy; and 4) Positive provider relationships and communication are important facilitators to CT participation. Conclusion: To promote health equity and participation in CTs among Black women with BC, interventions should consider multiple perspectives and prioritize addressing culturally sensitive patient-provider communication, shared decision-making, and patient empowerment. The information we learned will inform the development of a culturally tailored decision aid video.
Citation Format: Leslie R. Carnahan, Eliza B. Cohn, Tigist Mersha, Neha Hippalgaonkar, Ryan Nguyen, Kauthar Salum, Ana Williams Waite, Christen Sandoval, Lolita Coleman, Beulah Brent, Paris Thomas, Paramjeet Khosla, Kent F. Hoskins, Vida Henderson. Patient, Provider, and Advocate Perspectives on Factors that Impact Participation of Black Women in Breast Cancer Clinical Trials [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B096.