Abstract B034: Improving patient-centered care for inflammatory breast cancer: Strategies for addressing barriers faced by patients, researchers, and providers
Authors: Gerahart-Serna Larisa , Lane Whitney , Fish Laura , Tran Anh N , Devi Gayathri R , Hough Holly , Ingraham Kearston L 
Published: September 2020

Introduction: Inflammatory breast cancer (IBC) is a rare but the most lethal breast cancer often misdiagnosed as mastitis or dermatitis since majority of cases lack a clinically apparent tumor mass and present with progressive breast erythema and skin edema. Further exacerbating this is its incidence, more often, in premenopausal women who have yet to initiate regular screening, and/or its manifestation in women of color, in whom the signs of disease may be more subtle. Thus, the goal of this research is to understand IBC awareness and knowledge of clinical signs related to diagnosis and treatment amongst the general public, patients, and primary care providers in order to design effective interventions to improve patient care. Methods: Responses (500+ unique) were collected from a facilitated session and representative post meeting interviews including researchers, clinicians, patients, and community stakeholders on open-ended questions related to IBC diagnosis, treatment barriers, and strategies to improve patient care. For thematic analysis, responses were subdivided into patient/community, provider, and organizational level using NVivo 12 Pro qualitative software. Grounded theory shaped both design and analysis. Results: Based on participant responses, barriers at the patient/community level (69.4%) were recognized to be the greatest. The primary factor identified was related to living in a rural community/distance to a treatment center (21.1%). At the organizational level, obstacles included limited or no access to an appropriate treatment center (42.2%), lack of IBC-specific standard of care (20.0%), lack of central source of information about IBC (20.0%) and need for trained patient navigators (8.9%). This analysis highlighted that patients often experience multiple misdiagnoses before finding a physician that correctly recognizes IBC - 79.4% responses indicated a lack of education among primary care providers (79.4%), misdiagnoses due to patients not fitting the typical breast cancer profile (13.1%), and a dearth in communication between physicians and patients (7.5%). This study also identified specific strategies, which included developing culturally tailored IBC media campaign and community-facing patient navigation to address barriers such as social support and care for patients in rural or underserved communities. Conclusions: Taken together, three themes in IBC care were identified- a) barriers to timely diagnosis and treatment, b) strategies for community engagement, and c) the need for provider education. These datasets have led to the development of survey instruments to assess gaps of knowledge during diagnosis and treatment in IBC patients and primary care providers including physicians, physician assistants, and nurse practitioners in the community. Supported by Duke SOM Interdisciplinary Colloquium (GRD); DCI Behavioral and Health Survey Research Core Award (GRD, LF, AT); C-REP 1P20-CA202925-01A12 (GRD, HH, LGS, NB); T32 Surgical Oncology training (WL).

Citation Format: Larisa Gerahart-Serna, Whitney Lane, Laura Fish, Anh N Tran, Gayathri R Devi, Holly Hough, Kearston L Ingraham. Improving patient-centered care for inflammatory breast cancer: Strategies for addressing barriers faced by patients, researchers, and providers [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr B034.