Shared experiences of diagnosis and treatment of young-onset colorectal cancer: a patient-oriented qualitative study

Abstract

Abstract Objective: The aim of this study was to gain a better understanding of the lived experiences of young-onset colorectal cancer (yCRC) from the perspective of patients and/or caregivers. Methods: We conducted a qualitative study, in collaboration with COLONTOWN ® , an online colorectal cancer community. Individuals who have been diagnosed with yCRC, that is below the age of 50 years, or care for an individual with yCRC were invited to complete an online survey primarily comprising of an open-ended question asking participants to share their yCRC experiences in a text box, similar with how they may post on a social media platform. We applied an inductive, qualitative approach to identify themes arising from participants’ experiences. Results: From May to June 2019, we gathered experiences from 109 patients with yCRC and 11 caregivers. The majority of patients with yCRC were female (86, 71.7%) and diagnosed between the ages of 30 and 39 (49, 40.9%) and 40 and 49 years (61, 50.8%). We identified 8 themes: symptoms experienced; being misdiagnosed; advocating for oneself; appreciation of the healthcare team; frustration with the healthcare team and healthcare system; lasting effects of yCRC and its treatment; connecting with others; and reflections on experiences with yCRC. Conclusions: Our study highlights challenges experienced by yCRC patients across diagnosis, during treatment, and after treatment, notably misdiagnosis and need for access to information and support. Our study raises awareness of yCRC and experiences of individuals impacted by this disease.