Determining the care quality perception gap between patients and service providers: Comparative analysis of 2019 and 2023 UK IBD benchmarking data from more than 26,000 adult patients and 154 IBD services

Abstract

Background: Quality of care in inflammatory bowel disease (IBD) may be measured using patient-reported experience measures (PREMs) alongside service self-Assessment. Understanding discrepancies between perspectives is essential to improve patient outcomes. Method(s): In 2019 and 2023 national benchmarking took place across the UK, closely aligned with all clinical domains of the 2019 IBD UK Consensus Standards of healthcare for adults and children with inflammatory bowel disease. All hospitals offering specialist IBD services were invited to complete an online self-Assessment including 121 questions. Patients were invited to complete an aligned survey in which they answered up to 86 questions regarding the services and the care they received. We compared changes over time, alignment between healthcare-reported and patient-reported data, and explored factors associated with higher patient perceived care quality (PPCQ). Result(s): From 26,760 patient responses and 154 service assessments, PPCQ fell between 2019 and 2023 (p < 0.001). Male sex and older age were associated with higher PPCQ. Greater disease severity was associated with lower PPCQ (p < 0.001). More patients reported IBD symptoms to impact activities of daily living in 2023 (p < 0.001). Service factors associated with higher PPCQ included rapid diagnosis and treatment initiation, support from an IBD team led by a named gastroenterologist and knowledgeable IBD nurses. As demonstrated in Figure 1A & 1B, access, information, communication, empowerment, well-being and research were identified by patients as important and all were identified by patients as needing improvement (p < 0.001). In a deeper analysis of factors across these domains (Figure 2) including shared decision making, addressing wider life goals, pain, fatigue, and information about medications, services felt they were performing better than patients reported (p < 0.001) highlighting important discrepancies between quality metrics reported by service providers and service users. Conclusion(s): This is the largest and most detailed longitudinal patient-reported dataset of care quality to date with a parallel healthcare-reported dataset. Findings emphasise 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.