Background: Colorectal cancer (CRC) incidence is increasing in adults aged <50 years (young-onset CRC, YO-CRC). Younger individuals are more likely to experience longer diagnostic delays compared to their older counterparts, however, it is unclear whether these diagnostic experiences could subsequently affect their perceptions of healthcare throughout survivorship.
Aim: To compare the diagnostic and care experiences of YO-CRC patients to those who were older at the time of their diagnosis.
Methods: Eight semi-structured focus group sessions were held between November 2022-March 2023. Reflexive thematic analysis was used to understand the experiences of individuals who had received treatment for a primary CRC at Flinders Medical Centre (South Australia). Of 20 participants who were diagnosed with stage I-IV CRC between 11-38 months prior, 6 were aged <50 years during their diagnostic journey.
Results: The diagnostic experiences of YO-CRC patients were perceived to depend on the luck associated with finding a “good” clinician who took their concerns seriously and sent them for further testing. In contrast, those who experienced a longer time to diagnosis received more misdiagnoses and saw multiple doctors over periods spanning several months or years. Luck was perceived to play less of a role throughout the diagnostic experiences of older participants. However, independent of age, the diagnostic experiences of those who had multiple clinical presentations often negatively shaped their subsequent perceptions of care; these individuals indicated that they had reduced trust in their clinicians following their diagnostic journey.
Conclusion: Negative diagnostic experiences can have long-lasting effects on subsequent care experiences, highlighting the importance of effective doctor-patient communication throughout the diagnostic journey. As luck was perceived to play an important role in the diagnostic experiences of YO-CRC patients, it is vital that awareness of YO-CRC is increased among clinicians to reduce patients’ time to diagnosis.