We succeeded in developing a survey instrument to assess PCP knowledge gaps and barriers to timely diagnosis and care of IBC patients. The responses collected post-survey dissemination revealed that although PCP are an essential part of the interprofessional approach to diagnosing and managing cancer patients, they lack knowledge of IBC symptoms, are uncertain regarding standardized IBC screening and treatment plans, and desire improved collaboration with cancer specialists. These three significant factors impact timely IBC diagnosis and treatment. Furthermore, participants indicated a desire to develop PCP-targeted IBC educational tools. To our knowledge, this is the first mixed methods study developed to identify the needs of primary care providers to effectively diagnose and treat IBC in the United States. The findings are significant and confirm a key theme that arose from an interactive community engagement session at an IBC national meeting with diverse stakeholder attendees (e.g., patients, clinicians, advocates, government, academic, and other health professionals and community members) to address critical needs in IBC clinical care and outreach [12]. In that national conversation, lack of education at the primary care provider level was identified as the primary factor contributing to disparity in diagnosis, care, and referral practices [13].
To address the difficulties of IBC symptom recognition among PCP, a clinical intervention of interest is the development of a clinical decision support system (CDSS) embedded within the electronic health record (EHR). CDSS are intended to improve healthcare delivery by enhancing medical decisions with targeted clinical knowledge, patient information, and other health information [32]. In the context of IBC, CDSS could be strategically used to aid in symptom recognition and diagnosis, imaging recommendation, and referral support. For example, PCP could input a patient’s symptoms and clinical observations into the CDSS and retrieve an output of a list of possible or probable diagnoses, including IBC. This output could also include a list of IBC specialists. This could be of immense value as IBC is associated with reproductive risk factors and mammary gland involution during post-pregnancy and lactation periods and, in general, a delay in cancer detection of up to 15 months has been reported in pregnant or breastfeeding women, leading to a 2.5-fold higher risk for diagnosis at an advanced stage [17].
Aside from symptom recognition, CDSS can aid PCP in ordering the most appropriate imaging, reminding them of best practice guidelines, and providing a list of specialists for referral [19]. Currently available data suggest that CDSS can have a positive impact on the quality of cancer care delivery [33] with the goal of being embedded directly into the EMR to avoid workflow disruption [42].
In addition, knowledge gaps among PCP regarding symptom recognition and management of suspected IBC highlight the need for the development of enhanced educational opportunities. PCP reported a preference to take online CME modules to improve differential diagnosis and their ability to educate their patient population. Recent literature has shown that CME is an effective mechanism to contribute to knowledge gain among primary care providers in the United States [21]. Specific to IBC, two studies report the benefits of CME programs employed in Egypt and Tunisia [39] and in Pakistan [41] toward improving IBC knowledge, early detection, and referral of IBC cases.
Breast cancer-screening guidelines in the US and Europe are increasingly recommending that a risk assessment for breast cancer be performed at the PCP level [7, 29]. Our survey instrument could be valuable in assessing deficiencies even before developing specific educational modules, a crucial step for effective learning among PCP [4] in cancer diagnosis, treatment, and survivorship care [8, 36]. In the future, it would be valuable to evaluate a pilot IBC CME program among PCP based on pre- and post- CME surveys of knowledge. It is also important to note that classic textbook images that do not capture the range of presenting signs and symptoms across skin tones may contribute to missed diagnoses in patients with atypical presentations. Thus, it is imperative to include diverse clinical presentations of IBC. We should also identify opportunities to integrate IBC education modules into existing clinical curriculums for PCP trainees (e.g., MD, PA, nursing). There is no reason to wait until PCP trainees enter into the clinical practice realm to enrich their understanding of IBC and how to better navigate care coordination, especially since participants in this study reported that with the advent of the COVID-19 pandemic, a significant proportion have experienced breast cancer referral delays, and are diagnosing less breast cancer. Following the development of IBC CME modules, future work is also needed to evaluate the efficacy of online CME among PCP. In conclusion, IBC is understudied and associated with a lack of care concordant guidelines, and the involvement of PCP from definition of diagnosis to quality monitoring has the potential to improve patient survival, and quality of life and to improve health equity. The survey instrument tested here has the potential to serve as a blueprint to design, implement, and evaluate interventions to support PCP in diagnosing and managing IBC and may be expanded to include other rare cancers.