Abstract A060: “If it’s something that I can do for my future generations…”: Using multiple qualitative methods to inform an intervention to promote shared decision making and participation in clinical trials among Black women diagnosed with breast cancer
Authors: Carnahan Leslie R , Henderson Vida , Mersha Tigist , Hippalgaonkar Neha , Nguyen Ryan , Cohn Eliza B , Salum Kauthar , Williams Ana , Coleman Lolita , Brent Beulah , Murphy AnneMarie , Thomas Paris , Khosla Paramjeet , Hoskins Kent 
Published: December 2023

Abstract
Background: Black women are more likely to present with advanced stage disease and to die following a breast cancer (BC) diagnosis compared to women from other racial/ethnic groups. While there are many contributing factors to this inequity (i.e., tumor biology, social and structural health determinants, racial injustice, and differential access to and utilization of high-quality mammography, diagnostics and therapies), persistent underrepresentation of Black patients in cancer clinical trials (CTs) slows scientific advancements. Objective: The goal of the FOR ME (Fostering Opportunities in Research through Messaging and Education) Study is to develop, optimize, and test a narrative decision aid intervention (web-based video) for Black women diagnosed with BC to promote shared decision making and CT participation. Here, we report on the development phase, wherein our objective was to identify salient themes and to understand lived experiences to enhance authenticity and to inform video content. Methods: Guided by community-based participatory research approaches, we used multiple qualitative methods (key informant interviews (KIIs) and story circles) to identify barriers and facilitators that support decision-making and CT participation. The KIIs, completed in-person, via phone, or video conferencing, were recorded and professionally transcribed. The research team used thematic analysis and inductive coding approaches. First, a subset of transcripts was annotated, then annotations were compiled into a preliminary codebook. Inter-coder reliability testing is ongoing to improve quality and to refine the codebook. The analysis team is using Dedoose, to analyze quotations and code co-occurrences, application frequencies, and relationships. Data collection and analysis of the story circles is ongoing. Results: In total, 30 Black women with BC participated in KIIs. Interviewees ranged in age from 27 to 75 years (M=59 + 12 years); concerning insurance, 63% had a public and 33% had a private source. About 27% were currently receiving BC treatment and 27% had prior CT participation. Participants expressed both positive and negative perceptions of CTs, sometimes concurrently. Barriers to CT participation included competing responsibilities, logistical burdens, ineffective provider communication, a lack of knowledge of CTs, individual and systemic racism, CT burdensome characteristics (invasive, potential for side effects), and comorbidities. Facilitators to CT participation included strong patient-provider communication and relationships, CT non-burdensome characteristics (non-invasive, minimal side effects), having a sense that participation benefits future generations, increased understanding of the CT, and feeling empowered in decision-making .Conclusion: To promote health equity in CTs, interventions should promote strong culturally sensitive patient-provider communication with emphasis on shared decision-making and patient empowerment along with emphasis on benefits toward future generations to promote a willingness to participate in CTs.
Citation Format: Leslie R Carnahan, Vida Henderson, Tigist Mersha, Neha Hippalgaonkar, Ryan Nguyen, Eliza B Cohn, Kauthar Salum, Ana Williams, Lolita Coleman, Beulah Brent, AnneMarie Murphy, Paris Thomas, Paramjeet Khosla, Kent Hoskins. “If it’s something that I can do for my future generations…”: Using multiple qualitative methods to inform an intervention to promote shared decision making and participation in clinical trials among Black women diagnosed with breast cancer [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A060.