Background: Lynch syndrome (LS) is the most common hereditary cancer condition, with increased risks for colorectal, endometrial, and other cancers. Screening for LS is a Healthy People 2030 objective with demonstrated validity, utility, and cost-effectiveness. Yet LS screening programs have been variably implemented and studied, such that most individuals with LS are unaware that they have it. Critical gaps remain in LS screening program implementation, identification and addressing of disparities, and associated CER and PCOR to reduce the cancer burden for individuals and families with LS.
Proposed Solution to the Problem: Leveraging existing conferences scheduled for late 2021, the project team will bring together individuals with LS, patient organizations, clinicians, and researchers from across the country and variably resourced settings to explore ongoing needs and outcomes important to stakeholders and create a strategic plan for PCOR/CER in LS screening to meet the needs of individuals with LS and their family members to reduce cancer’s impact.
Objectives: To engage individuals with LS and their family members, clinicians, researchers, and patient organizations to understand the continued gaps and needs in implementation of LS screening programs. To identify the PCOR/CER priorities needed to close these gaps in LS screening, and develop a strategic plan for this research to meet the Healthy People 2030 goals.
Activities: The team will convene half-day activities in collaboration with two annual stakeholder meetings. The Living with Lynch workshop will engage patients and family member stakeholders while the CGA-IGC conference will engage clinical and research stakeholders. Project activities will utilize a deliberative engagement format and focus research priorities in PCOR/CER to create a strategic plan for such research.
Projected Outcomes and Outputs: Stakeholders will have a deeper understanding of the current state of LS research and screening program implementation and the importance of patient engagement to guide research. A summary of the deliberative engagement activities and results will be disseminated through other conferences, patient organizations, and publications. A strategic plan and roadmap for PCOR/CER in LS screening will be developed and will include plans for ongoing engagement and dissemination.
Patient and Stakeholder Engagement Plan: Patient partners through AliveAndKickn and clinical partners have jointly identified with the LSSN conferences for the proposed activities and planned this project and the ongoing collaboration throughout completion and dissemination of results.
Project Collaborators: The Lynch Syndrome Screening Network (LSSN), AliveAndKickn, Colon Cancer Coalition, Ohio State University, Collaborative Group of the Americas – Inherited Gastrointestinal Cancer professional organization, patients, family members, clinicians, and researcher stakeholders.
Alanna Kulchak Rahm, BS, MS, PHD
Last updated: January 20, 2023