Things I need you to know: a qualitative analysis of advice-giving statements in early-onset colorectal cancer patients’ personal accounts published online

Abstract

ObjectivePeople 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).DesignThe 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.SettingThe 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.ResultsWe 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.ConclusionHealthcare 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.

“Too young to have this kind of diagnosis”: A qualitative exploration of younger adults' experiences of colorectal cancer diagnosis

“…Supporting patients' active role in decision‐making through communicating an appropriate level of urgency and acknowledging stage‐of‐life challenges for younger people may lead to more timely diagnosis. Others have also identified patient self‐advocacy as a key aspect of quality care that could reduce time to diagnosis for younger adults with CRC 13 . Our study points to how this may be achieved.…”

“…Others have also identified patient selfadvocacy as a key aspect of quality care that could reduce time to diagnosis for younger adults with CRC. 13 Our study points to how this may be achieved. Greater support from and for GPs is needed to ensure that younger adults act on referrals in a timely way.…”

“…For example, an online survey by the US‐based CRC Alliance found over half of the 885 respondents with young‐onset CRC were initially misdiagnosed and three‐quarters saw multiple physicians pre‐diagnosis 9 —findings echoed in the 2020 Never Too Young report by Bowel Cancer UK 11 . Research examining the online narratives of younger adults with CRC found a perceived age bias in clinicians as a barrier to timely diagnosis 6,12,13 . Supporting this, analysis of general practitioner (GP) referrals to hospital specialists in the United Kingdom showed a tendency to use a “watch and wait” approach with younger patients, 14 and in a qualitative study GPs reported several issues complicating diagnosis of CRC in younger patients, including the common nature of presenting symptoms and age constraints imposed by referral guidelines 15 .…”

“…11 Research examining the online narratives of younger adults with CRC found a perceived age bias in clinicians as a barrier to timely diagnosis. 6,12,13 Supporting this, analysis of general practitioner (GP) referrals to hospital specialists in the United Kingdom showed a tendency to use a "watch and wait" approach with younger patients, 14 and in a qualitative study GPs reported several issues complicating diagnosis of CRC in younger patients, including the common nature of presenting symptoms and age constraints imposed by referral guidelines. 15 While these findings provide some insight into areas younger adults and clinicians find challenging during diagnosis, there is no qualitative research exploring patients' decisions in the diagnostic period.…”