Abstract A023: Results from a town hall meeting: Inflammatory breast cancer listening session led by KOMEN scholars
Authors: Dixion Maria , Ingraham Kearston L. , Robinson Seronda A. , Fleming Jodie M. , Devi Gayathri R. , Hough Holly , Kharabsheh Hamzah , Austin Dana M. , Tate Tia A. , Woodard Artis , Alexander Joshua , Packenham Joan P. , Barrett Nadine J. , Williams Kevin P. 
Published: August 2020

Introduction: Cancer is the leading cause of death in North Carolina. While the incidence rate of breast cancer (BC) is higher in White women, African American and Latino women are more likely to die from BC than White women. Moreover, inflammatory breast cancer (IBC) is a rare and aggressive form of BC, and African Americans are more likely to be diagnosed with IBC compared to whites, have poor BC outcomes, and generally are less likely to get life-saving information and resources to reduce cancer risks. Additionally, work is needed to improve diagnosis rates and decrease time to treatment for IBC patients. Translational research scientists do not get exposure to community engagement opportunities that can add to their knowledge of the research spectrum around a particular disease. Engaging new researchers in this arena can add to addressing cancer disparities research.

Methods: An IBC listening session was conducted during the annual Women's Health Awareness Day conference sponsored by the National Institute of Environmental Health Sciences and North Carolina Central University. The session was developed by KOMEN translational health disparities researchers as part of their enhanced community engagement training program. Scholars created the marketing plan and listening session guide for the program with guidance and training from staff experts. Scholars were note takers, facilitators, and created summary reports that highlighted guiding questions for the session, which included the following questions: 1)What do you know about BC? 2) Are you aware of different types of breast cancers? 3) Have you heard of IBC? 4) How aware do you think people in your community are about BC and IBC? 5) Where do you get your information about BC and IBC? 6) What are ways we should educate the community with getting information on how to become aware about the signs and symptoms of IBC?

Results: There were 49 African American and Latina participants. Only 15 of 49 attendees had heard of IBC. Most women were aware of causes and symptoms of breast cancer; however, there was a lack of awareness around IBC. Those aware of IBC learned about it from their coworkers, doctors, or had family members die from the disease. Participants recommended more one-on-one education, patient self-advocacy sessions, making education and awareness available online, changing breast cancer communication to include IBC symptoms, and letting people know that you can have breast cancer without the presence of lumps.

Conclusion: Poor awareness, communication, and education around inflammatory breast cancer risk factors were substantial. There is significant need to raise awareness in diverse communities about inflammatory breast cancer risks, screening guidelines, diagnosis, and treatment options. Community-engaged research lead by under-represented researcher scholars in training can add to the translational research training experience.

Citation Format: Maria Dixion, Kearston L. Ingraham, Seronda A. Robinson, Jodie M. Fleming, Gayathri R. Devi, Holly Hough, Hamzah Kharabsheh, Dana M. Austin, Tia A. Tate, Artis Woodard, Joshua Alexander, Joan P. Packenham, Nadine J. Barrett, Kevin P. Williams. Results from a town hall meeting: Inflammatory breast cancer listening session led by KOMEN scholars [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 A023.