Aims: Worldwide, the incidence of colorectal cancer is rising among adults under the age of 50 (early-onset colorectal cancer). It is the leading cause of cancer mortality for those aged 25-44 in Australia. Of concern, this population are more likely to have advanced-stage disease, 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 early-onset colorectal cancer.
Methods: Qualitative, semi-structured online/phone interviews were conducted with 17 people with early-onset colorectal cancer diagnosed in 2021-2022 in Victoria, Australia. Interviews were conducted an average seven months (range 1 – 13 months) after diagnosis and lasted 30 - 75mins. Ten participants had advanced (stage III/IV) disease. Analysis was approached from a critical realist perspective, with themes developed inductively using reflexive thematic analysis.
Results: Five themes were identified: Shifting Perception of Urgency, Multidimensional Perception of Role, Making the Most of Resources, Stage of Life, and COVID Adds Complexity. The decision-making process during the diagnostic interval was not static or uniform but evolved depending on the urgency perceived by younger adults and their health care team. As people perceived an urgency to act, they took on a more active role in decision-making, utilising personal resources to access more timely care. Their decisions were shaped by stage-of-life considerations, such as employment, reproductive health, study or caring for a young family. The COVID-19 pandemic also shaped decisions, adding “…a whole other layer of complexity”.
Conclusions: Younger adults with colorectal cancer 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 and health systems in the diagnostic period may improve the timeliness of colorectal cancer diagnosis and outcomes in younger adults.