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. Young-onset colorectal cancer refers to individuals diagnosed under the age of 50. In recent years, the incidence has increased by 2.2% annually in individuals younger than 50 years, and 1% in individuals 50-64, in contrast to a 3.3% decrease in adults 65 years and older. Young-onset (YO) CRC patients and caregivers face unique clinical challenges including fear and stress around the disruption of family and career developmental tasks and goals suggesting a need for additional psychosocial and financial support.

Methods: A cross-sectional study, conducted in the form of an online survey, was launched to better understand the experiences of YO-CRC patients and caregivers. YO-CRC patients and survivors (N=885) and caregivers (N=204) completed an online questionnaire that was based on established instruments including PROMIS, EORTC-QOL-30, and EORTC-CR-29. The final survey instrument and study plan were reviewed and approved by the Aspire Inc. Institutional Review Board.

Results: Nearly 75% of patients/survivors shared that they have been concerned about their mental health and 64% responded that they have needed help for their depression. Further, 67% of caregivers surveyed responded that they were also concerned about their own mental health and 68% responded that they needed help with their depression. Emotional exhaustion was reported by 77% of caregivers, whether they were providing round-the-clock care or caregiving from a distance. Emotional exhaustion was more pronounced in the patient/survivor cohort, with 95% indicating that emotional exhaustion impacted their lives. As a result of psychosocial distress, 71% of caregivers and 29% of patients/survivors indicated that they had withdrawn from other people. YO-CRC diagnosis changes what the patient/survivor can contribute to the family, both physically and emotionally, resulting in the caregiver having a change in their previous responsibilities. Of our respondents, 48% of caregivers indicated that their role in childcare changed; in addition, changes occurred in household responsibilities (77%), sexual/intimacy (51%), work (59%), and financial responsibility (42%).

Conclusions: These survey results indicate a need for the YO-CRC community to have access to resources to address unique issues. The physical and emotional stress on patients, survivors and caregivers is frequently not discussed which indicates a knowledge gap, not only in the lay population but also within the medical community. The Alliance is dedicated to working with all stakeholders, including policymakers, to address the unmet needs among caregivers, aiming to improve quality of life outcomes for caregivers in conjunction with their patients.

Citation Format: Kimberly Lynn Newcomer, Ronit Yarden, Laura Porter. Young onset colorectal cancer patients, survivors and caregivers: self-report clinical, psychosocial, financial and quality of life outcomes [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2021; 2021 Apr 10-15 and May 17-21. Philadelphia (PA): AACR; Cancer Res 2021;81(13_Suppl):Abstract nr 2629.