Abstract A034: How we learn from Black TNBC patients to act for equitable and unbiased care

• Published in: Cancer epidemiology, biomarkers & prevention biomarkers & prevention, 2023-12, Vol.32 (12_Supplement), p.A034-A034
• Main Authors: Leach, Virginia, Regante, Jeanne, Karmo, Maimah, Wittig, Lizzie
• Format: Article
• Language: English
• ISSN: 1538-7755; 1538-7755
• DOI: 10.1158/1538-7755.DISP23-A034

Background: Black women are at higher risk for early onset and increased breast cancer mortality, especially from the sub-type Triple-Negative Breast Cancer (TNBC), than their white peers. A patient experience survey has not been implemented or published for Black women diagnosed with TNBC. Tigerlily Foundation (TLF) conducted a TNBC survey of BIack women to understand the patient experience throughout the cancer continuum of care.  Methods: The survey instrument received an IRB exception and included 40 questions organized by the following themes: Demographics, Self-Detection/Early Assessment, Screening to Diagnosis, Diagnosis to Treatment, Post Treatment and Palliative Care/Survivorship, Emotional Trauma and Mental Health, and Trust/Bias. Data collection occurred between December 2022 and January 2023.  Two methodological approaches influenced this innovative study design: 1) a Health Literate and Culturally Sensitive approach and 2) a Trusted Outreach approach. The survey was sent to leaders of patient-based organizations who shared the TLF survey with their constituents.  Results: All participants (N = 106) racially identified as Black women diagnosed with TNBC. The age of participants ranged from 25 – 71. Participants were not always given information to manage their expectations before or after the screening process, as 38% reported they did not receive such information, while 45% reported they did. The number of times participants required diagnostic imaging ranged from only once (24%), two-three times (41%), four-five times (17%), or greater than six times (11%). Biopsies also varied among participants from one (25%), two-three times (40%), four-five times (15%), or greater than six times (8%). Biomarker testing was not equitably offered to all participants, as 30% reported they were not given the opportunity, while 48% were given the choice. While most participants reported a good understanding of their prognosis and treatment options (59%), other participants shared that the information they received could have been better (26%). Others stated they were given zero information to work with (15%). Many participants experienced a diagnosis change, and 57% were initially diagnosed with a different breast cancer subtype, while 24% were initially diagnosed with TNBC.  Conclusions: Prospective implementation science is needed to ensure equitable care standards are sustainably provided to Black women. It is imperative to understand the cancer care contin