Abstract 3349: Collected experiences of young-onset colorectal cancer caregivers

Abstract

Abstract The Colorectal Cancer Alliance launched a survey for caregivers of young-onset colorectal cancer (CRC) patients and survivors. A caregiver of young-onset CRC is an unpaid or paid member of a person's social network who helps them with activities of daily living. Caregivers who participated in our survey (n=427) are diverse: in age, gender, and racial/ethnic group. The majority of them were between the ages of 30-39. The caregivers reported they faced many challenges including lack of resources and information on young-onset disease and the course of the disease progression. Also, many caregivers indicated they had difficulty understanding the different treatment options offered by the physicians as well as the risk and long-term side-effects associated with these aggressive treatments. Only 40 percent of providers talked to patients about genetic testing and explained to the patient's family member their elevated risk of the disease and the associated need for timely screening. The majority of caregivers (59%) reported that their loved one experienced changes in their ability to perform expected social tasks, including those of a spouse, child rearer, friend, or worker. Some caregivers also mentioned the loss of sexuality, depression, pain, despair, lack of sleep, sadness, and stress, along with a loss of faith and hope, which may cause additional strain on their relationships. Thirty-two percent of caregivers reported insufficient psychosocial (66%) and financial support (44%) to effectively care for their patients. Participants also indicated that resources such as transportation, child care, household maintenance, prevention, and surveillance information for family members are limited. Overall, about one in three caregivers reported they were missing 24 hours or more of work each month to care for their loved one. A caregiver stated she needed, “Emotional and basic help around the house with her children and someone responsible enough to stay in the house to understand what we were going through as a family.” Taken together, our survey indicates that additional resources are needed to improve the ability for caregivers to manage everyday tasks, potentially helping caregivers feel more organized and in control. The ability of caregivers to care for themselves and use tools to care for their loved ones will reduce emotional and physical demands involved with caregiving that can cause strain and burnout. The Alliance will use these survey results to learn about and track the self-reported medical, psychosocial, and quality of life experiences of this often overlooked group. Citation Format: Kimberley L. Newcomer, Ronit Yarden, Never Too Young Advisory. Collected experiences of young-onset colorectal cancer caregivers [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2019; 2019 Mar 29-Apr 3; Atlanta, GA. Philadelphia (PA): AACR; Cancer Res 2019;79(13 Suppl):Abstract nr 3349.