Current unmet needs in inflammatory breast cancer/IBC patient care: Analysis of open-ended responses from a community engagement session of clinicians, researchers, advocates, and patients at the Duke Consortium for IBC conference

Introduction: Inflammatory breast cancer (IBC) is an understudied and aggressive breast cancer subtype, accounting for 7-10% of all breast cancer-related deaths in the United States. IBC is more common among African American (AA) women, who also develop higher rates of treatment resistance when compared to other races and survival rates are lower after adjusting for nonbiologic and socioeconomic factors. IBC typically lacks a clinically apparent tumor mass, leading to misdiagnoses and treatment delays. There is little research on the IBC patient perspective regarding quality of care, cost, or side effects of therapy. Methodology: In order to address critical needs in IBC clinical care and outreach across North Carolina and nationally, the Duke Consortium for IBC organized an interactive community engagement session. Attendees (n=174) at the local and national level included patients, advocates, NC government representatives and stakeholders (28%), health care providers (15%), staff (15%), academic research and clinical faculty from local universities and national IBC centers/laboratories (13%), trainees (9%), and other (16%). Facilitated small groups (3-8) discussed open-ended questions related to 1) gaps preventing timely diagnosis and treatment, 2) advocacy and grassroot programs, and 3) integrating research and outreach. Representative patients and facilitators/community partners were also contacted post-meeting for in-depth responses. All notes were recorded and thematic analysis using NVivo 12 Pro qualitative software was performed by three independent researchers. Grounded theory shaped both design and analysis. Results: A total of 506 unique responses were recorded and six major themes were identified: barriers to care (57.7%), education (16.4%), outreach/awareness (43.3%), fundraising (6.3%), legislative process/priorities (1.4%), and “other” (3.0%). Within those themes, three topics emerged: a) provider education, b) barriers to diagnostic and/or treatment delays, and c) raising awareness of IBC and late disease breast cancer in communities. Conclusions: This is the first report, to our knowledge, of a community engagement session and focused interviews that included clinicians, researchers, and patients/community stakeholders to address the unique needs and challenges for IBC patients. The study highlights the critical need to address lack of education around IBC at the provider and hospital level, and the need for better interaction with academic medical centers. Because treatment can be lengthy, social determinants, such as low socioeconomic status, may play an even larger role in patients with IBC. There is also a need for observational data on where knowledge gaps exist among providers and how missed diagnoses impact the patient in order to design improved interventions. Funding in part to GRD from Duke (SOM-Interdisciplinary-Colloquium, Surgery, Pathology, Medicine, Cancer Institute); IBC Network Foundation; 1P20-CA202925-01A12- Projects (GRD, NB). Citation Format: Gayathri R. Devi, Whitney Lane, Holly J. Hough, Kearston L. Ingraham, Larisa Gearhart, Nadine J. Barrett. Current unmet needs in inflammatory breast cancer/IBC patient care: Analysis of open-ended responses from a community engagement session of clinicians, researchers, advocates, and patients at the Duke Consortium for IBC conference [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr A038.