The 2026 IBD UK Standards of healthcare service design and delivery for adults and children living with Crohn's disease and ulcerative colitis

2026年英国炎症性肠病协会(IBD UK)制定的针对患有克罗恩病和溃疡性结肠炎的成人和儿童的医疗保健服务设计和交付标准

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Abstract

OBJECTIVE: Inflammatory bowel disease (IBD), including Crohn's disease and ulcerative colitis, requires consistent high-quality care to reduce variation in patient experience and improve outcomes. The IBD Standards previously published in 2009, 2013 and 2019 have provided an aspirational framework for best practice. Since 2019, two rounds of national benchmarking with patient engagement, healthcare professional (HCP) consultation and new evidence have highlighted areas for quality improvement (QI). We aimed to develop the 2026 IBD UK Standards of healthcare for adults and children, ensuring they reflect current and aspirational best practice and to support future QI initiatives. METHODS: A multidisciplinary working group of 18 HCPs and 4 people with lived experience assessed the 59 IBD standards from 2019, categorising them as needing no change, minor or major amendment or deletion. New standards were developed through iterative drafting and consensus review, with feedback incorporated from 47 external HCPs and a patient workshop. The 2026 standards remain aspirational, structured across seven domains: the IBD service, pre-diagnosis, newly diagnosed, flare management, surgery, inpatient care and ongoing care. RESULTS: The 2026 IBD UK Standards comprise 60 statements: 6 unchanged from 2019, 48 updated, 7 deleted and 6 new. Key themes include multidisciplinary, coordinated care with defined leadership; age-appropriate transition pathways; timely referral from primary care, access to diagnostic tests, treatments and surgery; patient-centred care, including better communication, personalised care plans, shared decision-making and support for self-management; holistic assessment and management of physical, nutritional and psychological need; QI and audit supported by electronic systems; research participation and innovation. CONCLUSIONS: The 2026 IBD UK Standards provide a contemporary aspirational framework to drive consistent, high-quality, personalised care across the UK. They aim to reduce inequality, improve experience and outcomes through support for patient-centred shared decision-making, national benchmarking, service development, patient involvement and QI.

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