Abstract P3-03-01: Awareness of Rare Cancers: Hearing and Engaging Rural Communities (ARCHER-C)
Blass, B; Woriax, H; Saincher, R; Greenblatt, L; Tran, AN; Devi, GR
Published in: Clinical Cancer Research
Background: Inflammatory breast cancer (IBC), a rare and NIH-designated cancer health disparity, is a highly aggressive form of breast cancer accounting for 7-10% of all breast cancer deaths. Furthermore, the unique presentation of IBC, lacking a solid mass and characterized by diffuse tumor cell spread, often leads to delays in diagnosis and treatment. Reproductive risk factors and higher incidence rates among younger women and those from minoritized and marginalized populations, underscore the crucial role of primary care providers (PCP)—including physicians, physician assistants, and nurse practitioners. Social drivers of health (SDoH) further limit healthcare access for these communities. Recognizing that primary care practices are the initial contacts for navigating cancer diagnosis and treatment, we postulated that understanding barriers experienced by PCP and members of the public will foster engagement with large academic medical centers and breast clinics for improved diagnosis and management of IBC. In this study, we describe the development of a platform (ARCHER-C), designed to assess PCP and public knowledge, attitudes and health seeking practices related to IBC in the rural setting, as well as rare cancers more broadly. Methods: Two surveys were developed with guidance from a Community Advisory Board, comprising members from academic institutions, urban and rural practices, topical experts, and patient advocates. PCP were recruited from FQHC and community practice settings within North Carolina. Mixed methods were used to analyze cognitive interview surveys administered to a convenience sample of participants recruited at-large from rural communities via email, social media; and direct recruitment from an urban practice serving primarily low-income, medically complex patients along with another clinic serving distinct rural communities. All responses were summarized using descriptive statistics. Results: Data from public (n=34) volunteers self-reporting as Black (45%), White (30%), American Indian/Alaskan Native (24%), and residing in households earning under $50,000/yr (40%) along with PCP (n=30) were analyzed. Salient measures of IBC diagnosis, health disparity factors, referral and care coordination practices, COVID-19 impact, and continuing medical education (CME) were identified barriers at the PCP level. Furthermore, seventy-four percent of public participants had not heard of IBC; 38% did not identify being overweight as a risk factor; 38% were not aware of racial disparities; 50% recognized redness or thickening of the skin as symptoms; and even fewer recognized the characteristic “pitted” appearance of the skin. Participants noted worry about what the doctor may find, difficulty or fear talking to a physician, lack of insurance, transportation barriers, and religious reasons as contributing to delays seeking health care. Most importantly, 97% of the participants expressed their enthusiasm in sharing information about IBC and rare cancers with others, specifically family members and friends. In addition, majority expressed that adding visual aids and providing educational materials about IBC at the time of survey would be helpful. Conclusions: This community-engaged model highlights the need for bidirectional provider- and public-facing research and education to reduce the burden of IBC and associated disparities. Strengthening the connection between primary care and specialized centers is essential for better diagnosis and management of IBC and other rare cancers, ultimately reducing health disparities. Funding in part by Duke Cancer Institute Community Outreach, Engagement, Equity Seed Grant (GRD, ANT) as part P30 CA014236, Duke MERITS Education Grant & Surgery Funds (GRD). Anh Tran and Gayathri Devi; Co-Senior Authors.Citation Format: Beau Blass, Hannah Woriax, Rashmi Saincher, Larry Greenblatt, Anh N. Tran, Gayathri R. Devi. Beau Blass, Hannah Woriax, Rashmi Saincher, Larry Greenblatt, Anh N. Tran, Gayathri R. Devi [abstract]. In: Proceedings of the San Antonio Breast Cancer Symposium 2024; 2024 Dec 10-13; San Antonio, TX. Philadelphia (PA): AACR; Clin Cancer Res 2025;31(12 Suppl):Abstract nr P3-03-01.