Colorectal Cancer Alliance, Washington, AZ
Kim Newcomer , Andrea Goodman , Negeen Fathi , Abdullah Shoeb
Background: Colorectal cancer is the third-most commonly diagnosed cancer and the second-leading cause of cancer death in men and women combined in the United States. With more than a dozen known mutations in colorectal cancer, and growing knowledge about different efficacy of drug options dependent on biomarker status, biomarker testing and results can aid in more effective and lifesaving treatment planning specifically for the unique characteristics of each individual’s tumor. However, biomarker testing in colorectal cancer remains low, and the Colorectal Cancer Alliance aims to increase knowledge and awareness of testing among patients and their care teams. Methods: In 2019, the Alliance distributed an online survey to assess patient, survivor, and caregiver knowledge and understanding of biomarker testing. The results identified patient confusion, suboptimal biomarker testing rates, and critical aspects of patients' medical treatment plan. To further understand identified gaps, the Alliance recruited a diverse set of patients and caregivers at various stages of colorectal cancer for a focus group in 2021 to explore understanding around biomarkers, treatment pathways, biomarker testing decisions, and gaps around current testing and re-testing processes. Working with an expert Advisory Committee, the Alliance utilized findings from the survey and focus group to plan a 2021 Summit focused on identifying solutions for known barriers. Results: Summit participants discussed innovative and evidence-based solutions focused on three audiences: patients, caregivers, and cancer care team members, to close some of the gaps identified previously. Patient solutions focused on cancer field-wide collaborations to create standard language and health literacy standards for biomarkers and testing that allow for clear, transparent notes, patient engagement, and shared decision making. Caregiver solutions focused on elevating the caregiver role as an advocate through updated telehealth infrastructure that allows for caregiver support in the journey. Cancer care team solutions focused on utilizing continuing medical education (CME) courses to create standard health literacy standards, become better advocates for biomarker testing, and create multidisciplinary discussion opportunities between health professionals. Conclusions: Patients and caregivers are overwhelmed by the complexity and variety of treatment options. It is critical that we put swift, collaborative solutions in place with efforts to improve resources, shared language, infrastructure, and advocacy to empower cancer care teams, patients and caregivers alike. We aim to increase knowledge of and access to guideline-concordant biomarker testing, so that patients, caregivers, and cancer care teams can make informed treatment decisions accordingly, and understand the choices and discussions at each step.
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