Listening to patients: A qualitative study on diagnostic delay, coping strategies and stigma in early-onset colorectal cancer.

Abstract

Early-onset colorectal cancer (EOCC), defined as colorectal cancer (CRC) diagnosed in patients under the age of 50, has increased alarmingly in Western countries in recent decades. Although risk factors, diagnostics and treatment approaches have been studied, the subjective experiences of EOCC patients remain underexplored. This study aimed to identify patient-perceived challenges and their unmet needs in Switzerland, a country with a high-resource healthcare system with minimal waiting times for investigations and comprehensive healthcare coverage. Nineteen semi-structured interviews were conducted between 09/2023 and 06/2024 with EOCC patients following a constructivist grounded theory approach. Participants from all cancer stages and aged between 30 and 50 years were recruited. We developed three main themes from the collected data: diagnostic delay, coping mechanisms and stigmatisation. Despite access to a well-resourced healthcare system, study participants experienced diagnostic delays, indicating the need for increased physician awareness and improved risk-based screening for high-risk individuals. Participants' key coping strategies included self-advocacy and participating in medical decision-making, like prioritising fertility preservation over rushed treatment. Participants reported fear of stigmatisation and isolation after being diagnosed. Such stigma manifested in concerns over alopecia or living with an ostomy. Finally, participants experienced an internal shift in personal priorities resulting in post-traumatic growth despite cancer diagnosis CONCLUSIONS: EOCC challenges current clinical practices. Better physician awareness, risk-factor-based screening policies, integrated discussions about individual treatment such as potential fertility issues and targeting stigma are critical for improving the EOCC patients' journey.