Learning from Black patients with TNBC to implement equitable cancer care.
Authors: Virginia Leach, Jeanne Regnante, Maimah Karmo, Lizzie Wittig, Shanda Cooper Goff, Krista Peoples
Journal: Journal of Clinical Oncology (2024)

e13141 Background: Black women are at higher risk of being diagnosed with the breast cancer sub-type Triple-Negative Breast Cancer (TNBC) than their white peers. This is the first patient experience survey 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 seven 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 unique 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 distributed the survey with their community members. 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%). Many participants experienced a diagnosis change, and 57% were initially diagnosed with a different breast cancer subtype, while 24% were initially diagnosed with TNBC. Most of the participants stated their doctor seemed knowledgeable working with them as a newly diagnosed TNBC patient (55%), many were unsure if their doctor seemed knowledgeable working with them as a newly diagnosed TNBC patient (30%), and others said their doctor did not seem knowledgeable (18%). The range of follow-up care received varied. The follow-up care identified was palliative care services (including mental health services, nutrition consultation, etc.) (32%), risk management (11%), high-risk tracking and education program (28%), survivorship support (42%), other services (4%), and no follow-up care services (5%). 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 from what they think of the care received and care they would have liked to receive. 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.