National audit of paediatric IBD service provision Organisational audit [Enter name of presenter] [Enter date of presentation]

Introduction to the IBD programme ‘Improving the care of people with IBD’ Five elements, 2012–2014 Inpatient care (1 Jan – 31 Dec 2013) Assesses the treatment that a patient receives when admitted to hospital. Each hospital participating in the audit collects information on the first 50 patients admitted with ulcerative colitis in 2013. Inpatient experience (1 Jan 2013 – 31 Jan 2014) Assesses the quality of patient care. Each patient included in the inpatient care audit is given a questionnaire when they leave hospital. They can comment on the care that they received and how this made them feel. Biological therapy audit (continuous audit) Collects information about treatment, delivery, disease activity and quality of life in patients who are prescribed infliximab or adalimumab for IBD.

Introduction to the IBD programme ‘Improving the care of people with IBD’ Five elements, 2012–2014 Organisational audit and quality improvement tool IBDQIP (1 Feb – 31 March 2014) A web-based self-assessment that enables hospitals to measure their organisation of care compared with national service standards. The tool identifies areas for improvement and facilitates change. Quality improvement: peer support visits A series of visits where hospitals are paired up and meet to compare results and identify methods for improving the quality of care for patients. The IBD programme team supports the clinical teams to share best practice and explore new ways of working.

Methodology Services were advised to meet as a multidisciplinary team to collect data into an online web tool Data collected was to reflect the IBD service ‘as at’ 31 December 2013 The dataset was mapped to the IBD Standards As soon as all data was entered onto the web tool and ‘submitted’, instant results were available in a results dashboard Online action planning (linked to results) was also available

Participation in the organisational audit 1 February 2014 – 31 March 2014 92% (23/25) specialist paediatric centres in the UK First time audit was available to a number of smaller-volume paediatric services Total 31 sites

Key indicators Key indicators round 4 National results Your site level data for this table can be found in your local site report (Section 2, Table 1) Key indicators round 4 National results Your site results Standard A1 – The IBD team Median (IQR) number of whole-time equivalent (WTE) paediatric IBD nurses on site 1 (0.6, 1.8) Median (IQR) number of WTE paediatric dietitians allocated to gastroenterology (0.4, 2) Standard A8 – Inpatient facilities Sites with an identifiable paediatric gastroenterology ward 29% (9/31) Sites with at least one toilet per three IBD patients 52% (16/31)

Key indicators continued Your site level data for this table can be found in your local site report (Section 2, Table 1) Key indicators round 4 National results Your site results Standard A10 – Inpatient care Sites with guidelines for the management of acute severe UC 77% (24/31) Sites where PUCAI score is used at day 3 and 5 for assessment of acute severe UC 74% (23/31) Standard A12 – Arrangements for the care of children and young people Site with a transitional care service for young people to support their transfer to adult services 90% (28/31)

Key indicators continued Your site level data for this table can be found in your local site report (Section 2, Table 1) Key indicators round 4 National results Your site results Standard C2 – Rapid access to specialist advice Sites where relapsing patients can be seen for specialist review within 7 days 94% (29/31) Standard E1 – Register of patients under the care of the IBD service Sites with a searchable database or registry of paediatric IBD patients 68% (21/31) Standard E3 – Participation in audit Sites where patients undergoing ileal pouch surgery are entered into the pouch registry 56% (9/16)

Recommendations All site should implement guidelines for management of acute severe UC which include regular use of the PUCAI. Outcomes of ileal pouch surgery should be entered to the national pouch registry. Ongoing monitoring (national or local) should continue against the IBD standards. All services should aim to provide an annual review for all patients with IBD. IBD services should continue to enrol eligible patients to relevant clinical trials. All services should capture clinical data about their IBD patients on a regularly maintained database. Patients should have a voice and direct involvement in the development of their IBD service. Services must be able to demonstrate that mechanisms are in place to obtain and respond to patient feedback.

Your three key areas for local change Local key area What action is needed to facilitate change? Who will be responsible? How and when will you review this action? Guidelines for the management of ASUC Write local algorithm and circulate to MDT Consultant Gastroenterologist and IBD nurse At and MDT meeting in Dec 2014

Acknowledgements Thank you to all the hospital-based staff who contributed towards case note retrieval and data collection. For further information, contact: ibd.audit@rcplondon.ac.uk