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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. [ABSTRACT FROM AUTHOR]

Objective: People with early-onset colorectal cancer (EOCRC), defined as colorectal cancer (CRC) before the age of 50, now constitute a significant patient population. In empirical and grey literature EOCRC patients report unsatisfactory experiences of care, especially in relation to protracted intervals from first help-seeking to diagnosis. This study is the first to investigate EOCRC patients' perspectives on ways to improve experiences of care. The objective is to provide foundational knowledge for the development of EOCRC-specific patient-reported experience measures (PREMs)., Design: The study was designed as qualitative Internet Mediated Research, involving a thematic analysis of unsolicited narratives recounting personal experiences of EOCRC care. We examined advice-giving statements in 120 online texts written by EOCRC patients and survivors., Setting: The Internet is the broad research setting. The host websites of three prominent charitable CRC support organisations were selected as specific research sites: Bowel Cancer Australia, Bowel Cancer UK and Bowel Cancer New Zealand., Results: We found that 90% of texts comprised statements of advice to new patients about the importance of self-advocacy in achieving quality care. Four key contexts for self-advocacy were identified: (1) accessing relevant diagnostic services; (2) driving diagnostic investigations when symptoms are not resolved; (3) involvement in treatment decision-making and (4) proactivity about preferred outcomes. Over 30% of advice-giving texts also directed statements of advice to healthcare providers, indicating that their youthfulness had been a barrier to timely diagnosis., Conclusion: Healthcare barriers to, and facilitators of, patient self-advocacy may be indicators of quality EORC care. There is a need for greater awareness of the impact of age bias on the responsiveness of clinicians and healthcare services in EOCRC care. Our findings support the development of EOCRC-specific PREMs that can guide age-appropriate policy and practice for this newly identified patient population., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)