Abstract P1-15-04: Real-world deficiencies in IBC patient care: A patient-led survey of care patterns across the US
Authors: Arnold Terry Lynn , McMordie Kathleen , Alexander Anglea 
Published: March 2020

Abstract
Background: Inflammatory breast cancer (IBC) is a rare aggressive form of breast cancer that has distinct clinical needs including trimodal therapy and unique considerations regarding the timing and appropriate types of reconstruction. Social media provides patients with rare diseases treated in diverse settings access to information about standard of care and other patients experiences. The IBC Network Foundation moderates several Facebook groups, the largest of which currently consists of 1000+ IBC patients. The goal of these groups is to offer high-quality guideline-concordant information regarding treatment for IBC. Due to the incidence of IBC being low, IBC care is not routinely taught during medical training, leading to disparities in care among patients treated by physicians with different knowledge-bases. Underuse of trimodal care has been reported to be associated with worse clinical outcomes in IBC; hence understanding what factors drive suboptimal treatment choices may improve patient survival and quality of life.
Methods: A 37-question patient-led online survey was created to gather real-world data regarding patterns of care for patients diagnosed with IBC from 2015-18 in the US. Survey questions consisted of both quantitative and qualitative open-ended questions to understand patients opinions about IBC specialty centers, barriers to seeking specialty care, as well as treatment choices, and outcomes. The responses received represent about a third of total group members diagnosed within the time period in which the survey covered.
Results: A total of 144 survey responses were received, 139 of which met the study eligibility criteria. Of these, 109 were from patients diagnosed with stage 3 IBC and 30 were from patients diagnosed with stage 4 disease. A subset of patients reported seeking care from IBC specialty centers (38/139, 27%). Those who did not, but wanted to receive care at an IBC specialty center identified common barriers that limited their ability to do so. The most common reasons were the cost of travel and accommodation (44%), insurance limitations regarding coverage of medical costs at a specialty center (34%) and wanting to stay close to home to take care of family (24%). Analyses of guideline-concordant care (GCC) were limited to stage 3 patients due to the lack of agreement in the field on optimal care of de novo metastatic IBC and the need for decision-making based on response to systemic therapy which was not explicitly captured in the survey. Most stage 3 patients reported receiving trimodal care (94%), however not all of these patients received guideline-concordant oncologic surgery (87%). The most common variations were use of SLNB (n=10) and skin-sparing mastectomy (n=4). We compared surgeons recommendations with the type of surgery the patient chose, and found that 16% of patients were recommended an inappropriate type of surgery, however we note multiple cases of surgery recommendations being ignored and guideline-concordant care received. Most patients were offered reconstruction, however 18% were offered immediate reconstruction and 7 patients underwent immediate reconstruction, which is inconsistent with GCC.
Conclusions: Despite the trimodal standard of care for IBC being unchanged for 20+ years, there are still gaps in applying this knowledge of best practices. We found that surgical recommendations are least likely to be guideline-concordant. Information from well-moderated social media channels helps patients make data-supported decisions regardless of their care setting and should not be routinely discouraged. Barriers to seeking care at IBC specialty centers exist, and some of these may be unfounded fears that may be addressed by advocates and institutions wishing to treat patients with IBC.
Citation Format: Terry Lynn Arnold, Kathleen McMordie, Anglea Alexander. Real-world deficiencies in IBC patient care: A patient-led survey of care patterns across the US [abstract]. In: Proceedings of the 2019 San Antonio Breast Cancer Symposium; 2019 Dec 10-14; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2020;80(4 Suppl):Abstract nr P1-15-04.