Comparative analysis of inflammatory bowel disease (IBD) patient- and service-reported quality of care using 2019 and 2023 UK benchmarking data from more than 26 000 adult patient respondents and 154 IBD services

INTRODUCTION: The IBD UK Benchmarking surveys, conducted in 2019 and 2023, collected repeated data regarding the quality of inflammatory bowel disease (IBD) care across the UK using both service self-assessments and patient-reported experience measures (PREMs). We aimed to assess variation between patient and provider perspectives. METHODS: All UK hospitals offering specialist IBD services were invited to complete online surveys. Patients were invited through social media, charities, and clinical services. This study compared changes over the 4 years and examined alignment between healthcare-reported and patient-reported assessments. RESULTS: From 26 760 patient responses and 154 service assessments, patient-perceived care quality (PPCQ) declined between 2019 and 2023 (P < .001). Male sex and older age were associated with higher PPCQ. Greater disease severity was associated with lower PPCQ (P < .001). More patients reported IBD symptoms to impact activities of daily living in 2023 (P < .001). Factors associated with higher PPCQ included rapid diagnosis, being supported by an IBD team, and having knowledgeable IBD nurses. Access, information, communication, and empowerment were identified by patients as needing improvement (P < .001). Services with lowest quartile quality scores in 2019 demonstrated significant improvement over time, whilst those with highest 2019 scores demonstrated significant deterioration in PPCQ (P < .001). Services reported better performance than patients (P < .001). CONCLUSIONS: These data underscore the importance of assessing lived experience and the care quality perception gap between patients and service providers. Regular benchmarking including PREMs should be used to drive and assess service-level, national and international quality improvement initiatives.