DOI: 10.1158/1538-7755.disp23-a034 ISSN: 1538-7755

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

Virginia Leach, Jeanne Regante, Maimah Karmo, Lizzie Wittig
  • Oncology
  • Epidemiology


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 continuum from the perspective of the patients, what they think of the care received and what education, resources and care they would have liked to receive before or upon diagnosis. Health equity is not achieved based on EHR, county-level beneficiary data, or SEER data alone. Gathering patient experience information is a factor in achieving health equity. TLF successfully reached Black TNBC patients to share their authentic experiences and provided a framework for other research institutions and patient advocacy groups to do the same.

Citation Format: Virginia Leach, Jeanne Regante, Maimah Karmo, Lizzie Wittig. How we learn from Black TNBC patients to act for equitable and unbiased care [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 A034.

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