Abstract
There is limited patient involvement in radiological research for perianal fistulizing Crohn’s disease (pfCD), despite the crucial role imaging plays in diagnosis and management. Patient and public involvement (PPI) is essential for improving outcomes and aligning research with patient priorities. Although MRI is the gold standard for assessing disease activity, the incorporation of patient perspectives in its use remains underexplored. This PPI session aimed to gather patient insights on the use of MRI in pfCD.
A mixed-methods approach, guided by the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) Long Form, was employed to ensure comprehensive PPI reporting. An online survey, developed in collaboration with a patient representative, included both open and closed questions. The survey captured patient views on MRI experiences, advantages, challenges, and the utility of AI-generated MRI reports. A virtual session followed, providing an open environment for further discussion. The data were analyzed qualitatively using thematic analysis.
Forty-seven participants from six countries with Crohn’s disease (37 with pfCD) took part in the survey. Of the 37 eligible participants, 28 (76%) completed the survey. Discussions in the virtual session centered on patient expectations from MRI (see Figure 1a) and their definitions of fistula healing (see Figure 1c). Most patients (26/28, 93%) wanted MRI reports to compare previous scans, focusing on fistula changes and new abscesses. Preferred MRI intervals were every 12 months when stable (16/28, 57%) and more frequently after surgery (18/28, 64.3%, preferred at 3 months; see Figure 1b). Emotional relief was linked to MRI improvements, while complete healing was defined as closure of the fistula tract without active disease (see Figure 1d).
Key challenges included MRI access and report comprehensibility (see Figure 2b). Many patients expressed interest in AI-generated reports if they were clearly explained and validated by professionals, with specific preferences for the report structure (see Figure 2c).
This is the first study to explore patient viewpoints on MRI use in pfCD. The results emphasize the importance of patient-centered MRI reporting, with clearer and more actionable insights needed in reports. Incorporating PPI revealed critical patient challenges, including access to MRI services and understanding report content. Future research should focus on enhancing communication with patients and validating AI-generated MRI reports with professional oversight.
Figure 1. Patient Perspectives on MRI Fistula Reports: Key Information, Frequency Preferences, and Concepts of ‘Improved’ and ‘Healed’ Fistulas
Figure 2. Benefits, Challenges, and AI-Generated Solutions for MRI Scans in Perianal Fistulizing Crohn’s Disease
