Summary

Early-onset colorectal cancer (CRC) rates have been increasing worldwide, with roughly 18,000 people under the age of 50 projected to be diagnosed in the U.S. this year alone. Possible factors driving this trend include a combination of diet and lifestyle habits, lack of preventive screening among younger people, and a behavioral tendency among younger, healthier people to ignore symptoms until they become serious. Several recent events have put a spotlight on these issues. Notably, the U.S. Preventive Services Task Force lowered its recommended age for routine CRC screening to 45 from 50. This brings the official U.S. guidance in line with recommendations from the American Cancer Society and should make it easier for younger Americans to receive preventive care. Mainstream awareness of colon cancer risk among younger generations also increased substantially following the death of acclaimed actor Chadwick Boseman, who succumbed to stage 4 colon cancer at age 43 in August 2020. Despite this increased visibility and widespread accessibility of highly effective preventive screening, many people do not receive routine screening and many others ignore dangerous symptoms until the disease has already progressed. This has been a particularly challenging issue throughout the COVID-19 pandemic. According to an analysis published by Komodo Health and Fight Colorectal Cancer (Fight CRC) in May 2020, nationwide colonoscopy screenings and biopsies fell 90% during the height of the pandemic. Emergency Room Becomes Critical Link in Detection of Early-Onset Colorectal Cancer Research Brief | June 2021 2 TM In order to dig deeper into patient behaviors and patterns of care associated with early-onset CRC, Komodo Health and Fight CRC evaluated the patient journeys of colorectal cancer patients in three distinct age groups: under age 35, 35–49, and 50+. The analysis identifies the most common red flag symptoms associated with a subsequent CRC diagnosis, the types of healthcare providers most likely to see first red flag symptoms, the total time-to-treatment from presentation of initial symptom to eventual CRC diagnosis and treatment, and the frequency of metastases between age groups. It also draws on anecdotal stories from Fight CRC’s community of colorectal cancer patients to examine their first-hand experiences with the U.S. healthcare system.

Demb, J., Kolb, J. M., Dounel, J., Fritz, C. D. L., Advani, S. M., Cao, Y., Coppernoll-Blach, P., Dwyer, A. J., Perea, J., Heskett, K. M., Holowatyj, A. N., Lieu, C. H., Singh, S., Spaander, M. C. W., Vuik, F. E. R., & Gupta, S. (2024). Red flag Signs and symptoms for patients with Early-Onset Colorectal Cancer. JAMA Network Open, 7(5), e2413157.

Summary
Early onset colorectal cancer (EOCRC) is rising, and a new study sheds light on the potential reasons for delayed diagnoses. The study, “Red flag signs and symptoms and delays in diagnosis for early-onset colorectal cancer: A systematic review and meta-analysis,” was conducted by national nonprofit Fight Colorectal Cancer’s (Fight CRC) EOCRC working group and lead authors and researchers Joshua Demb, PhD, MPH, and Jennifer M. Kolb, MD, MS, and is published in the Open JAMA Network Publication.

Perea, J., Gallagher, P., & Delores, A. (2023). Lights and shadows in the early-onset colorectal cancer management and research: An integrative perspective – Physician scientist with patient advocates. Best Practice & Research in Clinical Gastroenterology, 66, 101851.

Summary
Early-onset colorectal cancer (age under 50 years) (EOCRC) is an entity of undeniable importance, both because of its growing incidence, and the population it affects. Other current reviews emphasize the essential points regarding the clinical management and knowledge of its molecular bases. However, we intend to go one step further. With the increased significance of patient participation and disease experience in mind, we have integrated the voice of the patient to show the weaknesses and the needs, and next steps in the advancement of knowledge and management of EOCRC. This integrative review of the different perspectives, clinical, research and the patients themselves, can therefore be defined as an integrative needs assessment. Hence, this may be a first step in working towards an essential homogeneity of definitions and action.

Dwyer AJ, Rathod A, King C, Vuik FER, Gallagher P, Davis A, Lander EM and Perea J (2024) Advancing early onset colorectal cancer research: research advocacy, health disparities, and scientific imperatives. Front. Oncol. 14:1394046. doi: 10.3389/fonc.2024.1394046.

Summary
Early onset colorectal cancer (EOCRC) emerged as the fourth foremost contributor to cancer-related mortality among both genders in the late 1990s. Presently, EOCRC (<50) ranks as the leading cause of cancer mortality in men and the second leading cause in women within the United States. Similar trends are now also evident globally, particularly in developed countries. Furthermore, there is strong evidence confirming that health disparities persist in the diagnosis and treatment of EOCRC, with signs indicating that these gaps may worsen in specific cases. These alarming trends highlight the critical need for research to inform evidence-based interventions to reduce the burden of EOCRC globally. Fight Colorectal Cancer (Fight CRC) is the leading patient advocacy group in the United States providing information on colon and rectal cancer research, prevention, treatment, and policy. It is the opinion of Fight CRC that an international, coordinated effort with the medical, research, scientific, advocacy, industry and funding community is needed to advance impactful research. Fight CRC, in partnership with José Perea, MD, PhD, of the Institute of Biomedical Research of Salamanca (IBSAL) in Spain, and partners, are working together to address this global phenomenon and are presenting a multi-faceted research approach to move the field forward.

James McCanney JD, Katy Winckworth-Prejsnar MPH, Alyssa A. Schatz MSW, Elizabeth A. Nardi MS, Andrea J. Dwyer, Christopher Lieu MD, Yelak Biru, and Robert W. Carlson MD. (2018). Journal of the National Comprehensive Cancer Network, 16(7), 801-806.

Summary

Advances in early detection and improved treatment during the past 30 years has led to a new issue in the oncology landscape: the unmet needs of the cancer survivor community. As of January 2017, there were >16.8 million Americans with a history of cancer, a figure that is estimated to increase to >20 million by 2026. For those living through and beyond a cancer diagnosis, the disease can affect an individual’s physical, psychological, psychosocial, social, economic, and spiritual well-being. The cancer survivor population might experience varying chronic side effects of treatment based on cancer type, specific treatments, and individual characteristics. Moreover, there is an increasing recognition of other common and substantial consequences of cancer and its treatment, including challenges associated with resuming activities of daily living and reintegration into the workforce. Navigating the survivorship journey is a complex process, requiring tools and processes that facilitate effective communication between patients, providers, caregivers, and the extended care team. Beyond the growing body of scientific literature and evidence-based tools for cancer survivorship, many questions remain regarding how to assess, treat, and prevent survivorship-related problems to promote high-quality, patient-centered cancer care.

To address the unmet needs of the cancer survivorship community, NCCN convened the NCCN Patient Advocacy Summit: Addressing Survivorship in Cancer Care in Washington, DC, on December 1, 2017. In preparation for the summit, NCCN conducted an environmental scan of existing and emerging aspects of survivorship cancer care through stakeholder meetings with survivors and patient advocacy groups to discuss needs, opportunities, and challenges in providing high-quality, patient-centered cancer survivorship care. The corresponding Patient Advocacy Summit featured stakeholders from the environmental scan and included survivorship discussions by the multistakeholder, multidisciplinary larger cancer care community.

Reese M. Garcia, MPH, Andrea J. Dwyer, BS, Sharyn Worrall, MPH, Keavy McAbee, MPH, Anjelica Q. Davis, MPPA

Opinion statement
Research advocacy is an evolving concept and should be tailored for the colorectal cancer research community. Research advocacy training and evaluation must be designed for the patient community with their insight included at each step of engagement, training, and implementation. Patient advocates bring a great deal of expertise to the research review process, but it is important to ensure that their insight is appropriately placed, and they bring an appropriate orientation to the research process as the most informed patient. This can be accomplished in part by providing advocates with the proper training, employing universal core competencies, and applying principles of adult learning. Additionally, the research community, advocacy organizations, and industry partners must understand the need to diversify the voices that are being leveraged to guide research, recognizing the importance of adequate mental health tools and compensation commensurate with their experience. As a community, it is necessary that we create and implement training programs, as well as evaluate and measure their impact to continually improve and tailor the delivery of this specific education. Research advocacy has become a necessity to the field, and when implemented effectively, research advocates can have a significant impact on the delivery of health care research, improving health outcomes for all those affected by colorectal cancer.

Le DT, Hubbard-Lucey VM, Morse MA, et al. A Blueprint to Advance Colorectal Cancer Immunotherapies. Cancer Immunol Res. 2017;5(11):942-949.

Summary

Immunotherapy is rapidly becoming a standard of care for many cancers. However, colorectal cancer had been generally resistant to immunotherapy, despite features in common with sensitive tumors. Observations of substantial clinical activity for checkpoint blockade in colorectal cancers with defective mismatch repair (microsatellite instability-high tumors) have reignited interest in the search for immunotherapies that could be extended to the larger microsatellite stable (MSS) population. The Cancer Research Institute and Fight Colorectal Cancer convened a group of scientists, clinicians, advocates, and industry experts in colorectal cancer and immunotherapy to compile ongoing research efforts, identify gaps in translational and clinical research, and provide a blueprint to advance immunotherapy. We identified lack of a T-cell inflamed phenotype (due to inadequate T-cell infiltration, inadequate T-cell activation, or T-cell suppression) as a broad potential explanation for failure of checkpoint blockade in MSS. The specific cellular and molecular underpinnings for these various mechanisms are unclear. Whether biomarkers with prognostic value, such as the immunoscores and IFN signatures, would also predict benefit for immunotherapies in MSS colon cancer is unknown, but if so, these and other biomarkers for measuring the potential for an immune response in patients with colorectal cancer will need to be incorporated into clinical guidelines. We have proposed a framework for research to identify immunologic factors that may be modulated to improve immunotherapy for colorectal cancer patients, with the goal that the biomarkers and treatment strategies identified will become part of the routine management of colorectal cancer.

Nikki A. Martin, Sue J. Friedman, Claire Saxton, Ronit Yarden, Stacie Lindsey, Erica Kuhn, Janine Guglielmino, Reese Garcia, Cassadie Moravek, Deborah A. Zajchowski, Andrea K. Miyahira, Denisse Montoya, Christine Verini, Janelle Schrag, Victor Gonzalez, Gillian Hooker, Cynthia Bens, Beth Davison, Marcia K. Horn; LUNGevity Foundation, Bethesda, MD; FORCE-Facing our Risk of Cancer Empowered, Tampa, FL; Cancer Support Community, Research and Training Institute, Washington, DC; Colorectal Cancer Alliance, Washington, DC; The Cholangiocarcinoma Foundation, Salt Lake City, UT; Susan G. Komen, Dallas, TX; Living Beyond Breast Cancer, Bala Cynwyd, PA; Fight Colorectal Cancer, Springfield, MO; Pancreatic Cancer Action Network, Manhattan Beach, CA; Onc Consult Svcs, San Francisco, CA; Prostate Cancer Foundation, Santa Monica, CA; The Life Raft Group, Wayne, NJ; CancerCare, New York, NY; Association of Community Cancer Centers, Rockville, MD; Lymphoma Research Foundation, New York, NY; Concert Genetics, Franklin, TN; Personalized Medicine Coalition, Washington DC, DC; LLS, St Augustine, FL; Int’l Cancer Advocacy Network, Phoenix, AZ

Summary

Biomarker testing has advanced precision medicine in cancer. However, not all eligible patients benefit from biomarker-driven therapies due to suboptimal testing rates. A working group of 20 patient advocacy groups representing solid/hematologic malignancies, three professional societies, and 18 pharmaceutical and diagnostics companies identified patient confusion inconsistent testing terms as a possible contributing factor to biomarker testing underutilization. The group aimed to address patients’ confusion by identifying and adopting consistent, plain language terms for biomarker and germline genetic testing that are applicable across cancer types.

Kristen J. Wells, Andrea J. Dwyer, Elizabeth Calhoun, Patricia A. Valverde,
Community health workers and non-clinical patient navigators: A critical COVID-19 pandemic workforce, Preventive Medicine, Volume 146, 2021.

The COVID-19 pandemic has resulted in substantial morbidity and mortality and challenged public health agencies and healthcare systems worldwide. In the U.S., physical distancing orders and other restrictions have had severe economic and societal consequences. Populations already vulnerable in the United States have experienced worse COVID-19 health outcomes. The World Health Organization has made recommendations to engage at risk populations and communicate accurate information about risk and prevention; to conduct contract tracing; and to support those affected by COVID-19. This Commentary highlights the ways in which an existing and cost-effective, but underutilized workforce, community health workers and non-clinical patient navigators, should be deployed to address the COVID-19 pandemic. Community health workers and non-clinical patient navigators have skills in community engagement and health communication and are able to gain the trust of vulnerable communities. Furthermore, many community health workers and non-clinical patient navigators have skills in assisting community members with meeting basic needs and with navigating public health and healthcare systems. Members of this workforce are more than prepared to conduct contact tracing. State, local, tribal, and territorial public health agencies and healthcare systems should be collaborating with national, state, and local organizations that represent and employ CHWs/non-clinical patient navigators to determine how to better mobilize this workforce to address the COVID-19 pandemic. Furthermore, Congress, the Centers for Medicare & Medicaid Services (CMS), and individual states need to adopt policies to sustainably fund their critically needed services in the long term.