Early-Onset Colorectal Cancer Patients Study: a mixed methods investigation of patients’ perspectives on barriers to timely diagnosis

The global incidence of colorectal cancer in people under the age of 50 is rising. Patients with early-onset colorectal cancer (EoCRC) experience a disproportionately lengthy diagnostic phase compared to people aged 50 years or over. While patient-led delays to EoCRC diagnosis are relatively well understood, very little is known about healthcare-led delays to timely diagnosis. This study investigates patients’ experiences and perceptions of heath service factors that delay diagnosis.
This is a purpose-designed mixed methods study of patients’ accounts of EoCRC diagnosis published on colorectal cancer support organisation websites in the United Kingdom, Australia and New Zealand, using quantitative content analysis and thematic analysis.

Increasing numbers of people aged under 50 are being diagnosed with colorectal cancer. Diagnosis often takes many months or even years, and the cancer is well advanced by the time the diagnosis is made. The treatments needed for late stage colorectal cancer can damage fertility and sexuality as well as having an impact on all aspects of lifestyle. Delayed diagnosis can be the result of not going to see a doctor soon enough, but we're also starting to see that doctors may not be acting on symptoms soon enough. Then again, it's a tough disease to diagnose in people under 50. We need more detail from patients about what happens from that first time they go see their doctors right through to the day they're diagnosed.

Patients’ perceptions of barriers to timely diagnosis were thematically similar across the three countries. Patients reported that clinical assessment of their symptoms centred on being too young for cancer and that doctors focused on investigations for common, non life-threatening health conditions. Continuity of care was impacted by referral delays, long wait times for colonoscopy and poor transfer of patient information across multiple providers. Inadequate interpersonal care was described as a problem in most reports of delayed diagnosis. Patients reported difficulties with their providers over symptom seriousness and very limited shared decision-making.
Overall, tensions between EoCRC patients’ expectations of health services and providers’ practice of diagnostic care were prominent in the narratives. We concluded that patients and providers may be caught in the gap between the established evidence of CRC at all ages and emerging guidance on the clinical and molecular features that distinguish EoCRC from traditional CRC. Currently, effective communication and shared decision-making may be the best tools providers have to ensure satisfactory patient experiences and timely diagnosis.