Personal Accounts of Young-Onset Colorectal Cancer Organized as Patient-Reported Data: Protocol for a Mixed Methods Study

Abstract

Background Young-onset colorectal cancer is a contemporary issue in need of substantial research input. The incidence of colorectal cancer in adults younger than 50 years is rising in contrast to the decreasing incidence of this cancer in older adults. People with young-onset colorectal cancer may be at that stage of life in which they are establishing their careers, building relationships with long-term partners, raising children, and assembling a financial base for the future. A qualitative study designed to facilitate triangulation with extant quantitative patient-reported data would contribute the first comprehensive resource for understanding how this distinct patient population experiences health services and the outcomes of care throughout the patient pathway. Objective The aim of this study was to undertake a mixed-methods study of qualitative patient-reported data on young-onset colorectal cancer experiences and outcomes. Methods This is a study of web-based unsolicited patient stories recounting experiences of health services and clinical outcomes related to young-onset colorectal cancer. Personal Recollections Organized as Data (PROD) is a novel methodology for understanding patients’ health experiences in order to improve care. PROD pivots qualitative data collection and analysis around the validated domains and dimensions measured in patient-reported outcome and patient-reported experience questionnaires. PROD involves 4 processes: (1) classifying attributes of the contributing patients, their disease states, their routes to diagnosis, and the clinical features of their treatment and posttreatment; (2) coding texts into the patient-reported experience and patient-reported outcome domains and dimensions, defined a priori, according to phases of the patient pathway; (3) thematic analysis of content within and across each domain; and (4) quantitative text analysis of the narrative content. Results Relevant patient stories have been identified, and permission has been obtained for use of the texts in primary research. The approval for this study was granted by the Macquarie University Human Research Ethics Committee in June 2020. The analytical framework was established in September 2020, and data collection commenced in October 2020. We will complete the analysis in March 2021 and we aim to publish the results in mid-2021. Conclusions The findings of this study will identify areas for improvement in the PROD methodology and inform the development of a large-scale study of young-onset colorectal cancer patient narratives. We believe that this will be the first qualitative study to identify and describe the patient pathway from symptom self-identification to help-seeking through to diagnosis, treatment, and to survivorship or palliation for people with young-onset colorectal cancer. International Registered Report Identifier (IRRID) DERR1-10.2196/25056

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

“… 31 We devised a method we termed Personal Recollections Organised as Data (PROD). 23 The PROD approach is theoretically constructivist, 32 seeking out the knowledge that materialises as patients recount and reflect on their experiences of healthcare in unsolicited research contexts, such as online environments. The PROD approach is also grounded in pragmatism 33 and framed by complexity science, 34 seeking real world knowledge of healthcare dynamics that can translate to tools for improvement in healthcare quality.…”

“…Further detail on the analytic methods involved in the PROD approach is available in the protocol for this study. 23 …”

“…The selected CRC support organisations consented to the analysis and/or the use of quotes and excerpts from the personal accounts published on their websites and to the dissemination of findings. 40 23 Information/data related to the study is stored on password-protected computers and archived on electronic databases on a secure server. In accordance with the Australian National Health and Medical Research Council guidelines for management of data and information in research, the records of this study will be retained for a minimum of 5 years post-study completion or last relevant publication.…”

“…CRC support organisations provide online platforms through their websites for CRC patients and survivors to publish accounts of their experiences in the public domain. These platforms present a substantial source of patient-reported, qualitative data on EOCRC care 22 23. The unsolicited nature of these data offers researchers a unique opportunity to understand what EOCRC patients want to say about their experiences and to examine the advice these patients offer others 22 24…”

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

“…The Macquarie University Human Research Ethics Committee approved the study (MQ HREC Reference No:52020666115757) granting that it has been conducted in accordance with the Australian National Statement on Ethical Conduct in Human Research (2007-Updated 2018) [ 56 ] and poses no risk of privacy infringement to authors of the texts. The study also adheres to the principles for IMR established by the British Psychological Society [ 57 ]. Further, all methods were performed in accordance with the relevant guidelines and regulations asserted by the World Medical Association Declaration of Helsinki [ 58 ].…”