As published in Preventive Medicine Reports, a new study by Duke researchers Gayathri Devi, PhD, and Anh N. Tran, PhD, MPH, reveals knowledge gaps and barriers in inflammatory breast cancer (IBC) diagnosis and care in the primary care setting. As a rare and lethal breast cancer subtype accounting for 10% of all breast cancer deaths, primary care providers (PCPs) play a pivotal role in recognizing patients’ initial symptoms and referring them for further evaluation. 
 
“Identifying barriers was our primary research goal, but we uncovered further nuances. Health disparities surfaced as an indicator of access to care challenges,” says Tran.
 
In rare cancers like IBC, general population disease surveillance data doesn’t equally reflect underserved populations, which have a higher incidence of rare breast cancer and worse survival outcomes. Acknowledging knowledge gaps around disparities and IBC symptoms, over half of surveyed PCPs were interested in more medical education. “Addressing provider education came up as a theme in many ways,” says Tran.
 
“We must consider how to implement efficient training and guidelines for providers as well other health professions trainees,” says Devi.

Years before the study, Devi received funding from the Duke School of Medicine to explore cancer health disparities. In collaboration with Duke Cancer Institute (DCI), Devi helped to lead a meeting in 2018 that brought together researchers, community providers, physicians, and government representatives to discuss rare breast cancer data, patient experiences, and health disparities. The IBC consortium and its efforts were published in Oncology Issues and the Journal of Cancer in 2019. 
 
“The culmination of the meeting was realizing we had to explore rare breast cancer in underserved populations to better advocate for population health improvements. Looking specifically at IBC within our local communities was the key place to start,” says Devi. 
 
“PCPs in North Carolina are community engaged and have access to a broad and diverse patient population, so it made sense to focus our next research in the primary care setting,” says Tran.

Devi and Tran’s survey revealed that difficulty following up with patients and specialists can delay IBC diagnosis and care, which affects underserved populations disproportionately. Many patients lack health literacy, transportation, health insurance coverage, or the financial ability to identify symptoms and attain timely care.
 
The COVID-19 pandemic further exacerbated access to care issues for patients. Over 60% of PCPs reported COVID-19 pandemic-related delays in breast cancer referrals.
 
At the time of diagnosis, many patients with IBC have aggressive cancer. The symptoms don’t present like traditional breast cancer; often, there’s no palpable lump. “If more PCPs are knowledgeable about these signs, especially in underserved populations, we could help more patients access quicker care and achieve better outcomes,” says Devi. 
 
Signs of inflammatory breast cancer include tender, red, warm, or swollen breasts, or a sudden change in the breast appearance, like skin thickness or a rash. 

“Health disparities are very layered; we want to further look at how to help providers better assess patients’ social drivers of health. When providers understand what patients value and patients’ social systems, it leads to better communication and trust,” says Tran.  
 
Devi and Tran are adapting the PCP study survey for providers in rural health settings to understand patient needs and barriers in different communities. “We know the incidence of later-stage breast cancer is more prevalent in rural areas; we want to dig deeper into that,” says Devi. 
 
Duke Cancer Institute selected this study for the Community Outreach Engagement Equity funds, which has allowed Devi and Tran to create a network that connects with providers in rural practices, engages community stakeholders as advisory board members, and trains rural track residents, undergraduates, and medical students.