The need for a personalized, comprehensive resource within the colorectal cancer community.

Abstract

e24139 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. In efforts to manage the disease, patients and caregivers turn to a variety of tools and resources for financial assistance, information dissemination, emotional and peer support, and treatment planning, among other critical issues and needs they face. The Colorectal Cancer Alliance (the Alliance) is committed to providing patients and caregivers with a resource solution that encompasses all potential areas of need. Methods: A survey aimed at understanding needs, barriers, and quality improvement opportunity was disseminated via the Alliance's Blue Hope Nation community for two weeks and by email. One hundred sixty-seven colorectal cancer patients and forty caregivers of colorectal cancer patients completed the survey. Results: Patients and caregiver respondents alike report reliance on external tools and resources to manage disease and support information. Of the support methods, patient respondents reported using social media (46.11%); notebooks, journals, and planners (45.41%); online articles (44.91%); the Blue Hope Nation Facebook group (41.32%); cancer discussion boards (35.33%); and spiritual or religious advice (29.94%). Caregiver respondents reported relying on friends and family (57.5%); the Blue Hope Nation Facebook group (47.5%); healthcare websites (47.5%); the Alliance website (42.5%); and spiritual or religious advisors (37.5%). To minimize diagnosis-related stressors, patients reported they look for financial assistance, local peer support and groups, and mental health help. To provide more efficient care and limit stress, the community suggested the need for financial help, communication and support from other patients and caregivers, and informational resources. Conclusions: These survey results are consistent with other published learnings about patient and caregiver reliance on support tools and highlights the myriad resources that patients and caregivers currently use for managing colorectal cancer. The saturation of the market has compelled the Colorectal Cancer Alliance to create a one-stop-shop, personalized resource with tools to organize and effortlessly share customized information treatment plans, and other support mechanisms. Such patient and caregiver-directed resources may enable a better care experience and potentially lead to better physical and mental health outcomes for patients and their caregivers.