“It's probably just hemorrhoids”: A qualitative exploration of the lived experiences and perceptions of long-term survivors of early-onset colorectal cancer

Abstract

Background: Colorectal cancer (CRC) among adults aged <50 years (early-onset CRC [EOCRC]) is projected to be the leading cause of cancer-related death by 2030. Although evidence-based guidelines for CRC screening now recommend beginning screening at age 45, the needs of many at-risk young adults are potentially being overlooked. Unanswered questions also remain regarding the effects of EOCRC on quality-of-life and psychosocial outcomes. This qualitative study explored the lived experiences and perceptions of a sample of adult EOCRC survivors in the United States through one-on-one interviews. Methods: An EOCRC advocate survivor team (AST) member led 27 structured virtual interviews using a 10-question interview guide. Data were analyzed using a 9-step inductive approach. Results: Participants were geographically diverse. Most were women (66.6%) who self-identified as non-Hispanic White (85.2%). The mean age at interview was 40.19 ± 5.99; at diagnosis, 33.93 ± 5.90. Six overarching themes emerged: signs and symptoms, risk factors, system-level factors, quality of life, social support, and reflection. Conclusions: The specific needs of individuals in this younger population of CRC patients should be considered during treatment and future interventions and throughout survivorship. Impact: While the reasons for the increasing incidence of EOCRC are currently unknown, the lived experiences and perceptions of EOCRC survivors noted in this study highlight specific needs of this population that can inform educational materials, comprehensive care, future research, and policy change.