Utilising qualitative analysis of online forum data to understand the impact of early onset colorectal cancer

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Spencer, Alice
Bedding, Christopher
Nicklin, Emma
Flint, Hélène
Gilbert, Alexandra

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LTHT Department

Non Medic

Publication Date

2025

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Conference Abstract

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Abstract

Background Incidence of early onset colorectal cancer (EOCRC) occurring in patients <50 is rising[1]. By virtue of diagnosis at a different life stage, younger patients may experience differing health-related quality of life (HRQOL) impacts. Understanding these impacts is vital to develop supportive interventions. Online forums offer researchers an unfiltered insight into patient experience, providing a rich source of qualitative data. Aims This study utilises qualitative analysis of online forum messages to understand the pertinent HRQOL impacts of EOCRC. Methods An online forum specifically for EOCRC was identified. A phenomenological approach was applied. Inductive coding (with 10% dual coding) and thematic analysis of extracted messages were used to describe diagnostic experience and effect on HRQOL. Results Eight main themes emerged from 463 forum messages posted over a five-year period: (1) diagnostic pathway and barriers; (2) employment and finances; (3) effect on children and parenthood; (4) stoma implications; (5) early menopause and fertility implications; (6) relationships, support systems and isolation; (7) mental health and (8) sport and exercise. Data extraction and analysis were conducted over a one month period. The themes identified using this time and cost-efficient methodology overlapped with those identified through systematic review[2,3] and additionally offered deeper insight into the considerable impact of isolation amongst younger individuals who do not represent the typical colorectal cancer patient. Conclusion Qualitative analysis of online forum messages is an effective and efficient methodology for identifying HRQOL impacts, reflecting those highlighted through systematic review and offering additional insights, particularly into the impact of isolation. This novel methodology could be adapted for use by qualitative researchers across the NHS offering a window into patient lived experience. Understanding the unique HRQOL of EOCRC provides a basis for further research into how NHS colorectal cancer services must adapt to the meet the needs of an expanding younger cohort.

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