Assessing knowledge and barriers at the primary care provider level that contribute to disparities in inammatory breast cancer diagnosis and treatment

ABSTRACT

Background: Although recognized as the most lethal breast cancer, inflammatory breast cancer (IBC), a NCI designated rare cancer and a cancer health disparity, is severely understudied. Given the unique presentation of diffuse tumor spread without a solid mass, not easily detected by selfbreast exams or mammograms, IBC patients often face delays in diagnosis and treatment leading to poor outcomes. Moreover, reproductive risk factors in IBC and high incidence in younger women, minoritized and marginalized populations highlight the significance of primary care providers (PCP) who are often the first point of contact when patients begin to notice symptoms. Method(s) In this study, we evaluated the knowledge gaps and barriers amongst PCP (physicians, physician assistants, nurse practitioners) in their ability to recognize the signs and coordinate care effectively for IBC. To assess PCP experiences with IBC in their practices and overall breast cancer care during COVID, we first conducted semi-structured interviews (n=11) with providers selected from a convenience sample at Duke University and in the local clinics. Based on data from these interviews and additional cognitive interviews, we developed and disseminated a comprehensive online survey (n=78). Result(s) In this study, access to care was identified as the single most important barrier to treating rare cancers. Furthermore, majority of the PCPs in this cohort identified only a moderate ability to recognize IBC in patients (mean = 3.3, range 1-7), thereby limiting early diagnosis. From the semi-structured interviews, PCPs recognized that IBC is not likely to be part of typical differential diagnosis when patients present with mastitis or breast changes, and most had not seen IBC in their practice. Only 31% (n=78) reported ever suspecting IBC in a patient. Delays in referrals to specialized large clinical centers were also reported as a major barrier. In particular, 62.8% (n=49) reported some delay in referrals for diagnostic imaging. In addition, since the COVID-19 pandemic started, 33% reported diagnosing less breast cancer cases and 63% reported that they experienced breast cancer referral delays. When asked what methods providers would find most helpful to learn more about diagnosing and caring for patients with IBC, the top three modes of preferred education were online CME options (53%);lunchtime, or other in-service training (33%);and website for patients and providers (32%). Conclusion(s) We succeeded in developing a survey instrument and to our knowledge first mixed methods study to assess PCP knowledge gaps and barriers to timely diagnosis and care of IBC patients. Results underscore need to develop PCP training modules and care coordination tools to improve guideline-concordant care. This survey instrument also has the potential to serve as a blueprint to design, implement, and evaluate interventions for other rare cancers.