“Too young to have this kind of diagnosis”: A qualitative exploration of younger adults' experiences of colorectal cancer diagnosis

Abstract

ObjectiveColorectal cancer (CRC) incidence is rising among adults under the age of 50 (early‐ or young‐onset CRC). This population is more likely to have advanced‐stage disease at diagnosis, suggesting their diagnostic pathway may be prolonged. To better understand factors influencing this pathway, this study explored patients' experiences of decision‐making during a diagnosis of young‐onset CRC.MethodsSemi‐structured interviews were conducted with 17 participants with young‐onset CRC diagnosed in 2021–2022 in Victoria, Australia. Interviews were conducted online or by phone an average 7 months (range 1–13) after diagnosis. Analysis was approached from a critical realist perspective, with themes developed inductively using reflexive thematic analysis.ResultsFive themes were identified: Shifting Perception of Urgency, Multidimensional Perception of Role, Making the Most of Resources, Stage of Life, and COVID Adds Complexity. Participants' decision‐making evolved over the diagnostic period. As participants perceived urgency to act, they took on a more active role in decision‐making, utilising personal resources to access timely care. Their decisions were shaped by stage‐of‐life considerations, including employment and caring for a young family, with the COVID‐19 pandemic adding “…a whole other layer of complexity” to the process.ConclusionsYounger adults with CRC make decisions in the context of unique considerations, adapting to reduce time to diagnosis, with decisions complicated by the COVID‐19 pandemic. Greater support from health care providers/systems in the diagnostic period may improve timeliness of CRC diagnosis and outcomes in younger adults.