Optimizing Patient‐Reported Outcome Measurement in an Inflammatory Bowel Disease Care Pathway: Results of the PROMOTION Study

Background Patient‐reported outcome measurements (PROMs) are key quality indicators and essential in the clinical evaluation of patients with inflammatory bowel disease (IBD). The PROMOTION ( p atient r eported o utcome m easurement questi o nnaire interven tion ) study evaluated the impact of a patient empowerment intervention on the response rates to PRO questionnaires. Methods This single‐centre nurse‐led prospective study included all patients with IBD in structured follow‐up between January and September 2024. PROMs (PRO‐2, IBD Disk and IBD Control) were distributed before each outpatient visit (in‐person or remote) and biannually at the infusion unit. In April 2024, a multi‐modal empowerment campaign was launched. Response rates were compared 3 months before and 6 months after the intervention, both in the overall population and stratified by mode of follow‐up. PRO‐2 remission rates were evaluated as a secondary outcome. Results A total of 1593 PRO questionnaires were sent to 811 patients. Overall response rate was 58.6%. Response rates were similar in the period before and after the intervention (57.7% vs. 59.0%, p = 0.6), but significantly higher in the first month after implementation (71.8% vs. 57.6%, p = 0.004). Stratified by mode of follow‐up higher response rates were seen during remote than in‐person follow‐up (88.5% vs. 56.6%, p < 0.001), and the intervention had no durable impact on response rates within either modality. PRO‐2 remission was seen in 68.2% of patients who fully completed all questionnaires, with balanced proportions between Crohn's disease and ulcerative colitis. Conclusion Improving patient participation in the assessment of PROMs by a single patient empowerment intervention leads to good short‐term but poor long‐term results. Sustained engagement efforts, particularly for digitally illiterate patients, are needed.