Summary Background Healthcare service provision in inflammatory bowel disease (IBD) is often designed to meet targets set by healthcare providers rather than those of patients. It is unclear whether this meets the needs of patients, as assessed by patients themselves. Aims: To assess patients' experience of IBD and the healthcare they received, aiming to identify factors in IBD healthcare provision associated with perceived high‐quality care. Methods Using the 2019 IBD standards as a framework, a national benchmarking tool for quality assessment in IBD was developed by IBD UK, comprising a patient survey and service self‐assessment. Results 134 IBD services and 9757 patients responded. Perceived quality of care was lowest in young adults and increased with age, was higher in males and those >2 years since diagnosis. No hospital services met all the national IBD standards for recommended workforce numbers. Key metrics associated with patient‐reported high‐ quality care were: identification as a tertiary centre, patient information availability, shared decision‐ making, rapid response to contact for advice, access to urgent review, joint medical/surgical clinics, and access to research (all p < 0.001). Higher numbers of IBD nurse specialists in a service was strongly associated with patients receiving regular reviews and having confidence in self‐management and reporting high‐ quality care. Conclusions This extensive patient and healthcare provider survey emphasises the importance of aspects of care less often measured by clinicians, such as communication, shared decision‐ making and provision of information. It demonstrates that IBD nurse specialists are crucial to meeting the needs of people living with IBD.

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Background and aimsHealthcare quality improvement (QI) is the systematic process to continuously improve the quality of care and outcomes for patients. The landmark Inflammatory Bowel Disease (IBD) UK National Audits provided a means to measure the variation in care, highlighting the need to define the standards of excellence in IBD care. Through a consensus approach, we aimed to establish key performance indicators (KPIs), providing reliable benchmarks for IBD care delivery in UK.MethodsKPIs that measure critical aspects of a patient journey within an IBD service were identified though stakeholder meetings. A two-stage Delphi consensus was then conducted. The first involved a multidisciplinary team of IBD clinicians and patients to refine definitions and methodology. The second stage assessed feasibility and utility of the proposed QI process by surveying gastroenterology services across UK.ResultsFirst, the four proposed KPIs were refined and included time from primary care referral to diagnosis in secondary care, time to treatment recommendation following a diagnosis, appropriate use of steroids and advanced therapies prescreening and assessment. Second, the Delphi consensus reported >85% agreement on the feasibility of local adoption of the QI process and >75% agreement on the utility of benchmarking of the KPIs.ConclusionsThrough a structured approach, we propose quantifiable KPIs for benchmarking to improve and reduce the individual variation in IBD care across the UK.

Background: Patient-Reported Experience Measures (PREMs) are key in improving healthcare quality, but no PREM exists for inflammatory bowel disease (IBD). This study aimed to co-produce a PREM with IBD service users for IBD service evaluation and quality improvement programme. Methods: A pool of 75 items was drawn from published survey instruments covering interactions with services and aspects of living with IBD. In Stage 1, during two workshops, eight expert service users reduced candidate items through a rankedchoice voting exercise and suggested further items. During Stage 2, 18 previously uninvolved people with IBD assessed the face and content validity of the candidate items in 'Think Aloud' interviews. During two final workshops (Stage 3), the expert service users removed, modified and added items based on the interview findings to produce a final version of the PREM. Results: Stage 1 generated a draft working PREM mapped to the following four domains: Patient-Centred Care; Quality; Accessibility; Communication and Involvement. The PREM included a set of nine items created by the expert group which shifted the emphasis from 'self-management' to 'living with IBD'. Stage 2 interviews showed that comprehension of the PREM was very good, although there were concerns about the wording, IBD-relevance and ambiguity of some items. During the final two workshops in Stage 3, the expert service users removed 7 items, modified

Background The IBD Benchmarking Tool, comprising an online Service Self-Assessment and Patient Survey, has provided a unique and comprehensive picture of Inflammatory Bowel Disease (IBD) care across the UK. The aim was to evaluate current local service performance to facilitate future quality improvement. Methods The IBD Patient Survey (PS) ran from July to November 2019 and the Service Self-Assessment (SSA) from October 2019 to January 2020. Detailed views were collected of the quality of IBD care from patient and clinician perspectives, measured against the UK IBD Standards 2019.1 The IBD UK National Report will be published in April 2021. Results 10,222 patients completed the PS. 89% (9,100/10,222) had found it hard to cope with having Crohn’s or Colitis over the previous year. 72% (6,954/9,640) rated the quality of their care as excellent, very good or good and 28% (2,686/9,640) rated the quality of their care as fair or poor. The top three factors that predicted how highly people with IBD rated their quality of care were: feeling supported by a team of specialists; having regular reviews; and discussing wider life goals and priorities, as part of planning their care. 26% (535/2,089) had waited more than a year for their diagnosis. 41% (849/2,087) had visited Accident & Emergency at least once before being diagnosed. 32% (656/2,057) were not offered any information about their condition when diagnosed. 91% (8,284/9,099) did not have a personalised care plan. Over the previous 12 months, 70% (6,732/9,574) had one or more flares and 72% (1,622/2,250) of inpatient admissions were unplanned. A key finding from the SSA (166 centres: 134 adult, 32 paediatric) was that no adult IBD services reported meeting the IBD Standards’ recommendation for whole time equivalent (WTE) staffing across the IBD team. Where services reported meeting the WTE for IBD nurse specialists, patients were more likely to rate the quality of their care highly and to have regular clinical review of their Crohn’s or Colitis. Conclusion The results highlight four key areas for change: improvements in diagnosis and information provision; personalised care and support for self-management; faster access to specialist advice and treatment; and effective multidisciplinary team (MDT) working. The Report sets out recommendations for action in each of these areas. To our knowledge, this is the first time that healthcare professionals and patients have assessed care against a common set of standards. The IBD Benchmarking Tool provides location-matched service performance and patient experience as an exemplar for others to follow. Reference