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. Methods 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). Results 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 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 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. Conflict of interest: Hawthorne, A Barney: No conflict of interest Christiansen, Paul: No conflict of interest Arnott, Ian: Personal Fees: Takeda, Vifor, Tillots, Cummings, Fraser: No conflict of interest Dobson, Liz: LD acknowledges funded time from the IBD Registry. Kent, Alexandra: I have received honoraria/Consultancy/Sponsorship fees from: Lilly, AbbVie, Coloplast, J & J, Pfizer, Takeda, Tillotts, Dr Falk, Galapagos/AlfaSigma Limdi, Jimmy: Speaker and Consultancy fees: Abbvie, Arena, AlfaSigma, BioHit, Bristol Myers Squibb, Celltrion, Eli Lilly, Ferring, Galapagos, Johnson & Johnson, MSD, Pfizer, Tillotts Mulligan, Robert: Robert J. Mulligan acknowledges research support from Open Targets, Wellcome Trust, European Bioinformatics Institute (EMBL-EBI), Genentech, GlaxoSmithKline, Merck Sharp and Dohme, Pfizer, and Sanofi and support for educational meeting attendance from Ferring. Parkes, Gareth: Dr Gareth Parkes reports personal payments, honoraria, speaker fees, travel grants and/or fellowships from AbbVie, Allergan, Bristol Myers Squibb, Celltrion, Ferring, Galapagos, Janssen, Napp, Takeda, and Tillotts, and directorship and shareholding with Ampersand Health. Dr. Parkes reports personal grants from AbbVie personal consulting fees from AbbVie, Arena, Aslan, AstraZeneca, Boehringer Ingelheim, Bristol Myers Squibb, Celgene, Eli Lilly, Ferring, Galapagos, Gilead, GlaxoSmithKline, Heptares, LabGenius, Janssen, Monte Rosa, MSD, Mylan, Novartis, Numab, Pfizer, Roche, Sandoz, Takeda, UCB, and XAP membership of the ECCO Scientific Committee, and membership in the UEG Scientific Committee director of Endoread. Rees, Fiona: Speaker fees: J & J, Dr Falk, Gilead, Intercept, Ferring, Pfizer, Takeda, Abbvie, Lilly Support for conference attendance and training: Pharmacosmos, Dr Falk, Ferring, Intercept Conference attendance support: I do not know how this is different from above Consultation fees: Celltrion, BMS, Takeda, Violicom Other (please specify): Volunteer for BSG, CCUK, IBD-UK and UKCPA Selinger, Christian Philipp: CPS has received unrestricted research grants from Warner Chilcott, Janssen, Galapagos and AbbVie, has provided consultancy to Warner Chilcott, Dr Falk, AbbVie, Takeda, Fresenius Kabi, Eli Lilly, Galapagos, Ferring, Arena and Janssen, and had speaker arrangements with Warner Chilcott, Dr Falk, Galapagos, AbbVie, MSD, Pfizer, Eli Lilly, BMS, UCB, Fresenius Kabi, Celltrion and Takeda. Turner, Jessica: Member of staff at Crohn’s & Colitis UK Woo, Nathaniel: Member of staff at Crohn’s & Colitis UK Younge, Lisa: Personal Fees: Abbvie, Takeda, Jannsen, Ferring Pharm Lamb, Christopher Andrew: Grants: I have undertaken research supported by grants from the following: Genentech, Janssen, Takeda, AbbVie, Eli Lilly, Pfizer, Roche, UCB Biopharma, Sanofi Aventis, Biogen IDEC, Orion OYJ, AstraZeneca, Bristol Myers Squibb (BMS), GSK and Merck Sharp and Dohme (MSD). Personal Fees: I acknowledge consultancy for MSD, Takeda, Janssen and BMS have received honoraria for development and/or delivery of education from Takeda, Ferring, Janssen, Dr Falk, and Nordic Pharma and have received conference attendance support from Tillotts Pharma UK, Janssen, Ferring and Takeda. Other: The following companies were corporate sponsors of the IBD Newcastle educational event I convened at Newcastle University in 2023 and/or 2025: AbbVie, Alfasigma, Amgen, Celltrion Healthcare, Flynn Pharma Ltd, Galen, Janssen, Johnson & Johnson, Tillotts Pharma, Pharmacosmos, Dr Falk Pharma, Galapagos, Ferring, Takeda, Eli Lilly and Bristol Myers Squibb, Pfizer, Sandoz.
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A B Hawthorne
Paul Christiansen
University of Liverpool
I Arnott
Journal of Crohn s and Colitis
University of Southampton
University of Leeds
University of Liverpool
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Hawthorne et al. (Thu,) studied this question.
synapsesocial.com/papers/69730f59c8125b09b0d1f2e0 — DOI: https://doi.org/10.1093/ecco-jcc/jjaf231.124