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.
Background In February and March 2022, the emergency department (ED) affiliated to a tertiary referral inflammatory bowel disease (IBD) centre in England undertook an audit of ED attendances as part of an IBD-related admission quality improvement project (QUIP). Quality standards recommend review within 5 days of a flare. Patients presenting to ED may reflect failure of urgent GP access or to the IBD advice line a marker of poor-quality care. Methods Patients with suspected IBD presenting to ED during the audit period were identified the initial results generated further questions for the IBD team. A excel data base was created and the electronic patient record for each patient was retrospectively reviewed. Data relating to previous contact with the IBD team, how patients were referred to ED and confirmation of an IBD diagnosis was collected. Descriptive statistical analysis was used to present the data. Results There were N=48 ED attendances with a suspected diagnosis of IBD between February and March 2022. From the N=48 attendances from n=41 patients, n=29 (60.42%) admissions occurred for these patients. n=19 (39.58%) episodes resulted in discharge with five of these being self-discharges. of the n=41 patients n=4(9.76%) did not have a diagnosis of IBD n=1 (2.44%) with a diagnosis of IBD was not known to the IBD interdisciplinary team. Additionally, n=2 (4.88%) were new patients neither were known to the IBD team and n=2 (4.88%) were suspect diagnosis. multiple attendances occurred and n=1 (2.44%) patient attended four times and n=4 (9.76%) patients attended twice each meaning n=5 (12.2%) of the patients were responsible for n=12 (25%) of attendances. Of the original N=48 attendances, n=32 (66.67%) attendances occurred with no contact to the IBD advice line and n=19 (46.34%) of the n=41 patients responsible for these attendances. The outcomes are summarised in Table 1. Conclusion The original QUIP data was incomplete, and the actual IBD ED attendance rate was 66.66% of the original quoted figure, raising the importance of data cleaning and quality in QUIP. Focusing in on the 32 attendances where patients did not call the advice line, improvements to the messaging that IBD advice line service is available has become a priority as has utilising advanced nurse practitioner and specialist registrar skills to support patients therefore avoiding some of this ED attendance in the future. So far, adding advice line details to clinic letters, advertising in clinic, and setting up rapid access flare clinic led by Advanced Nurse Practitioners from the IBD Nursing team have been implemented. There are plans to review the attendance at IBD patients in ED in the same period in 2023.
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