Personal accounts of young-onset colorectal cancer organized as patient-reported data: protocol for a mixed methods study

Background:
Young-onset colorectal cancer is a contemporary issue in need of substantial research input. The incidence of colorectal cancer for adults under the age of 50 is rising in contrast to the decreasing incidence of this cancer in older people. People with young-onset colorectal cancer may be at the stage of life in which they are establishing 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 outcomes of care throughout the patient pathway.

Objective:
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 Organised 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 (PRO) and patient-reported experience (PRE) questionnaires. PROD involves four processes: classifying attributes of the authors, their disease states, their routes to diagnosis, and the clinical features of their treatment and post-treatment; 2) coding texts into the PRE and PRO 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 obtained for the use of the texts in primary research. Approval for the study was granted from Macquarie University Human Research Ethics Committee in June 2020. The analytic framework was established in September 2020 and data collection commenced in October 2020.

Conclusions:
The findings from this study will identify areas for improvement in the PROD methodology and inform the development of a larger-scale study of young-onset colorectal cancer patient narratives. We believe this will be the first qualitative study to identify and describe the patient pathway from symptom self-identification to help-seeking through diagnosis, treatment and into survivorship or palliation for people with young-onset colorectal cancer.