People with early-onset colorectal cancer describe primary care barriers to timely diagnosis: a mixed-methods study of web-based patient reports in the United Kingdom, Australia and New Zealand

BACKGROUND: People with early-onset colorectal cancer, under the age of 50, are more likely to experience diagnostic delay and to be diagnosed at later stages of the disease than older people. Advanced stage diagnosis potentially requires invasive therapeutic management at a time of life when these patients are establishing intimate relationships, raising families, building careers and laying foundations for financial stability. Barriers to timely diagnosis at primary care level have been identified but the patient perspective has not been investigated. METHODS: Personal accounts of cancer care are increasingly accessed as rich sources of patient experience data. This study uses mixed methods, incorporating quantitative content analysis and qualitative thematic analysis, to investigate patients’ accounts of early-onset colorectal cancer diagnosis published on prominent bowel cancer support websites in the United Kingdom, Australia and New Zealand. RESULTS: Patients’ perceptions (n = 273) of diagnostic barriers at primary care level were thematically similar across the three countries. Patients perceived that GPs’ low suspicion of cancer due to age under 50 contributed to delays. Patients reported that their GPs seemed unaware of early-onset colorectal cancer and that they were not offered screening for colorectal cancer even when ‘red flag’ symptoms were present. Patients described experiences of inadequate information continuity within GP practices and across primary, specialist and tertiary levels of care, which they perceived contributed to diagnostic delay. Patients also reported tensions with GPs over the patient-centredness of care, describing discord related to symptom seriousness and lack of shared decision-making. CONCLUSIONS: Wider dissemination of information about early-onset colorectal cancer at primary care level is imperative given the increasing incidence of the disease, the frequency of diagnostic delay, the rates of late-stage diagnosis and the dissatisfaction with patient experience reported by patients whose diagnosis is delayed. Patient education about diagnostic protocols may help to pre-empt or resolve tensions between GPs’ enactment of value-based care and patients’ concerns about cancer. The challenges of diagnosing early-onset colorectal cancer are significant and will become more pressing for GPs, who will usually be the first point of access to a health system for this growing patient population. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12875-023-01967-0.