Abstract

3592 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. The Colorectal Cancer Alliance launched the Never Too Young Survey and the Caregiver Survey to assess and better understand the unmet needs of the young-onset population and their caregivers. Methods: A cross-sectional study, conducted in the form of an online survey, was launched to better understand the experiences around 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 mental health, and 68% responded that they needed help with their depression. Seventy-one percent of caregivers often felt sadness, and 30% indicated that they had lost hope. Emotional exhaustion was reported by 77% of caregivers, whether they were providing round-the-clock care or caregiving from a distance. The effect was more pronounced in the patient/survivor cohort, with 95% indicating that emotional exhaustion impacted their lives. As a result, 71% of caregivers and 29% of patients/survivors indicated that they had withdrawn from other people. These results indicate the emotional toll that colorectal cancer has on patients/survivors and caregivers and their need for further resources. Conclusions: The Colorectal Cancer Alliance is committed to meeting these needs and providing resources that support patients, survivors and caregivers. Information and services may assist the caregiver in helping the patient make decisions, including shifting roles and routines in response to changing demands of YO-CRC. Further studies should investigate psychological well-being and support strategies.

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