Abstract P5-17-04: Changing the DCIS conversation: Development of an alternative discourse by patient stakeholders in the COMET study
Authors: ES Frank, D Basila, D Collyar, D Pinto, ML Smith, J Geirisch, T Lynch, S Hwang
Journal: Cancer Research (2018)

Abstract The conversation about ductal carcinoma in situ (DCIS) is structured and influenced by traditional oncology values and beliefs, resulting in current standards of guideline concordant care (GCC). It is now widely known that DCIS is a heterogeneous condition requiring a tailored treatment approach based on characteristics of the specific lesion. Further, “low-risk” DCIS—defined as low grade, hormone-receptor positive condition—may be a subset with lower likelihood of progression to invasive breast cancer. Yet, most women diagnosed with any type of DCIS are encouraged to undergo the same immediate, aggressive treatments that women diagnosed with invasive breast cancer receive. Emerging evidence suggests that surgery may not increase overall survival compared to no surgery in many women diagnosed with low-risk DCIS. The COMET (Comparison of Operative to Monitoring and Endocrine Therapy) study is a new randomized, prospective clinical trial funded by the Patient-Centered Outcomes Research Institute that aims to determine whether active surveillance is a safe and reasonable alternative to GCC for patients with low-risk DCIS. COMET also seeks to change the way patients, providers, and other key stakeholders view DCIS management options. Thus, COMET governance integrates patient collaborators into every aspect of planning and development via a Patient Leadership Team (PLT) and an independent external multi-stakeholder advisory board (SAB). The PLT is a fully integrated, yet autonomous part of the COMET study governance and is comprised of 4 patient advocates who meet independently and with COMET Principal Investigators (PIs). The SAB is a fully external and independent body of clinicians, content experts, payers, patients and patient advocates, and policymaker advisors. To facilitate the cultural shift, the PLT developed communication materials with language and terminology that aims to communicate a diagnosis of DCIS without increasing unnecessary fear and anxiety that often accompanies a diagnosis of invasive cancer. In collaboration with study team PI's and the SAB, PLT also has developed content for a newly established website (www.DCISoptions.org), which includes patient-centered materials that aim to help newly diagnosed patients understand that a majority of DCIS is low-risk and that they have time to make informed decisions about their care. The PLT contends that managing DCIS is as much a cultural phenomenon as a scientific one. As such, changing the conversation about DCIS between medical providers and patients is essential for generating a cultural shift in understanding the condition, correcting risk perception, and enabling improvement in patient experience. The novel approach of a stand-alone PLT that is also integrated throughout the trial's stakeholder structure ensures patient-centered involvement across all aspects of the study. The unique talents of each stakeholder group are leveraged in a unified effort to educate the DCIS community about low-risk DCIS, with the overarching goal of enabling a patient to choose the treatment approach that best reflects her risk profile and personal preferences, thus minimizing potential physical, emotional, and financial harms. Citation Format: Frank ES, Basila D, Collyar D, Pinto D, Smith ML, Geirisch J, Lynch T, Hwang S. Changing the DCIS conversation: Development of an alternative discourse by patient stakeholders in the COMET study [abstract]. In: Proceedings of the 2017 San Antonio Breast Cancer Symposium; 2017 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2018;78(4 Suppl):Abstract nr P5-17-04.