Patient-led thematic analysis on the impact of living with inflammatory bowel disease: a contemporary appraisal of 415 patient-reported outcomes to improve care and research.

Background: The conceptual context of wellbeing for people living with inflammatory bowel disease (IBD) is complex and encompasses many dimensions. Here, we employed a wholly patient-led analysis to provide a unique "patient first" narrative on wellbeing and IBD. Methods: Our report draws on data from a Wellbeing Survey led by the Glasgow and Edinburgh IBD Science team as part of the MUSIC IBD cohort study (www.musicstudy.uk) with over 1375 IBD respondents in 2023 from the United Kingdom and globally. Our public and patient involvement (PPI) group utilized unstructured patient-reported experiences and conducted a high-level topic analysis and based their own lived experience of IBD to explore and assimilate the 415 free-text responses on the priorities and unmet needs of our IBD participants. Within the PPI group, a transparent structure of patient-led analysis, identification of key topic areas, discussion, and finally writing was agreed at the start of the project with minimal input from the clinical team. Results: The analysis provided an in-depth exploration of several key themes affecting wellbeing in IBD patients. Of interest, the PPI group discussed and explored themes such as "what does remission mean?," access to care, expectations of self-management, mental and women's health. The patient narratives highlighted the variability of IBD experiences, the interconnectedness of these issues, and the importance of holistic, patient-centric approaches to care. The findings emphasize the necessity for improved support, both within and beyond healthcare settings. The findings are written and presented by our PPI group to provide viewpoints that resonate directly with people living with IBD. Conclusion: Our patient-led research approach demonstrates that allowing patients to lead in analysis ("taking the reins") and reporting provides deeper and impactful insights into IBD experiences. By shifting the lens of analysis via the patient when integrating their perspectives into wellbeing. This study thus, advocates for a patient-dominant approach to research and care, which can provide unique insights into ways to improve outcomes and to address the complexities of living with IBD.