Abstract B019: “It's probably just hemorrhoids”: A qualitative exploration of psychosocial and lifestyle changes and challenges accompanying an early-onset colorectal cancer diagnosis
Authors: Rogers Charles R. , Korous Kevin M. , De Vera Mary A. , Shaukat Aasma , Brooks Ellen , Henley Candace , Johnson Wenora , Rogers Tiana N. 
Published: December 2023

Background: Colorectal cancer (CRC) among adults aged &lt; 50 years (early-onset CRC [EOCRC]) is projected to be the leading cause of cancer-related death by 2030. Unanswered questions remain regarding the effects of EOCRC on quality-of-life and psychosocial outcomes affected by an EOCRC. 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 early-onset CRC advocate survivor team (AST) member led 27 structured interviews virtually with adults diagnosed with early-onset CRC (mean age at diagnosis = 33.93±5.90). The interview guide consisted of 10 questions, which was co-developed by the lead author, third author, and two AST members. Data was analyzed using a 9-step inductive approach, where a hybrid coding approach was employed that involved both a priori codes as well as any concepts, actions, relationships, and meanings that differed from the pre-set codes. Results: Study participants were from across the country, with over half living in the Southern (44.4%) or Midwestern (22.2%) regions. Most participants were women (66.6%) and self-identified as Non-Hispanic White (85.2%). The age of study participants at the time of interview ranged from 28 to 53 years (mean age = 40.19 ± 5.99) and their age at diagnosis ranged from 26 to 44 years (mean age at diagnosis = 33.93 ± 5.90). Six overarching themes were identified from the interviews with two to three subthemes: 1) Signs and Symptoms (Self-Misdiagnosis, Provider Misdiagnosis), 2) Risk Factors (Family History, Lifestyle, Blame/Defensiveness), 3) System-Level Factors (Provider Recommendations, Navigating Care/Pace of Treatment, Perceptions of Medical Workers), 4) Quality of Life (Fertility and/or Sexual Health, Mental Health/Therapy, Self-Advocacy), 5) Social Support (Support Groups and Family, Friends, and Others), and 6) Reflection (Prevention, Personal, Advocacy). Conclusions: The overall lived-experiences gathered from interviewees highlights specific needs of early-onset CRC identify patients that can be used to inform educational material and comprehensive care. Although the causes of the increase in young-onset CRC remain unknown, psychosocial as well as lifestyle changes and challenges should be considered during treatment and future intervention as well as throughout survivorship in this younger population of CRC patients.  Impact: The lived experiences and perceptions of EOCRC survivors highlight specific needs of this population that can inform both educational materials and comprehensive care.

Citation Format: Charles R. Rogers, Kevin M. Korous, Mary A. De Vera, Aasma Shaukat, Ellen Brooks, Candace Henley, Wenora Johnson, Tiana N. Rogers. “It's probably just hemorrhoids”: A qualitative exploration of psychosocial and lifestyle changes and challenges accompanying an early-onset colorectal cancer diagnosis [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr B019.