Abstract PO5-10-04: Rare to Care: Assessing Awareness and Health Disparity Factors Related to Inflammatory Breast Cancer in the Primary Care Setting
Authors: Gayathri R Devi, Lawrence Greenblatt, Rashmi Saincher, Valerie Keck, Beau Blass, Sarah Weaver, Alexandra Bennion, Anh Tran
Journal: Cancer Research (2024)

Abstract Background: The diagnosis of inflammatory breast cancer (IBC) is life-changing as it is a rare, highly aggressive breast cancer variant designated by NIH as a cancer health disparity. Given the unique presentation of diffuse tumor cell spread in the absence of a solid mass, which is not easily detected by self-breast exams or mammograms, IBC patients often face delays in diagnosis and treatment. Therefore, an individualized and a multifaceted approach that addresses the unique needs of the patient with input from both providers and the community is an unmet need. To address this, we are investigating the current knowledge and perspectives of providers and public related to rare cancers like IBC in primary care practices. Methods: Researchers and advanced practice providers collaboratively drafted and piloted the initial surveys with guidance from a Community Advisory Board, comprising of members from academic institutions, primary care practices in urban and rural setting, topical experts, and patient advocates, in order to assess primary care providers (PCPs) and general public knowledge, attitudes and health seeking practices related to rare cancer like IBC. Results: The surveys are currently being administered statewide specific to PCPs or public via cognitive interviews and/or using an online survey tool within North Carolina as a model of a large state (100 counties) with a range of population densities, race, ethnicities, and environmental burdens. Challenges elaborated at the PCP level include communicating rare cancer information, gaps in confidence in diagnosing IBC, timely follow-up with patients, and accessing specialty care and an unmet need for developing PCP educational modules to improve guideline-concordant care. Public data analyzed to date is from a Duke Outpatient Clinic, an urban ambulatory care teaching practice serving primarily low-income, medically complex patients in Durham (n=14) included 69% Black, 93% female, with 68% in households earning under $50,000 annually). 71% had not heard of IBC; 64% did not identify high BMI as a risk factor; 36% did not know there is differential race-related incidence; 74% did not recognize IBC-specific symptoms. 50% noted lack of insurance, transportation, religious reasons, or difficulty or fear of talking to a physician contributed in general delay in seeking health care. Most importantly, 93% expressed feeling comfortable sharing information about IBC with others. Majority expressed that adding visual aids and providing educational materials about IBC at the time of survey would be helpful. Conclusions: The results highlight the role of PCPs, including physicians, physician assistants, and nurse practitioners, who are often the first point of contact when patients begin to notice signs or symptoms. The general public and the patients with common breast cancer subtypes can provide valuable insight into their own health care experiences, what works for them and what barriers they face in their communities, which can be used to compare with experience of patients with IBC and other rare cancers. Overall, the lessons from this study inform the development of effective tools to educate PCPs and patients for this understudied cancer that contributes to disparities in clinical and survival outcomes in minoritized and marginalized populations. Support in part from the Duke Cancer Institute pilot as part of the P30 Cancer Center Support Grant (P30CA014236) and Duke School of Medicine Behavioral Health and Survey Research Core Facility Award (GRD, ANT); Duke Advanced Practice Provider Leadership Institute scholarship (VK, GRD), Department of Surgery (GRD); Duke Ahead Education grant; NIH/NCI RO1CA264529-01 (GRD); ACS Mission Boost grant MBG-20-141-01-MBG (GRD), Nakayama Public Service Scholar Award (AB). Citation Format: Gayathri R Devi, Lawrence Greenblatt, Rashmi Saincher, Valerie Keck, Beau Blass, Sarah Weaver, Alexandra Bennion, Anh Tran. Rare to Care: Assessing Awareness and Health Disparity Factors Related to Inflammatory Breast Cancer in the Primary Care Setting [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO5-10-04.