Inpatient care and inpatient experience of young people with ulcerative colitis in the UK

1. Inpatient care and inpatient experience of young people with ulcerative colitis in the UK [Presenter / title] [Date of presentation]

2. 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.

3. 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 explores new ways of working.

4. Methodology • Prospective patient identification • Ulcerative colitis (UC) • Reduced dataset • Up to 50 audited admissions per site

5. Participation in inpatient care • 1 January 2013 – 1 December 2013 • 96% (24/25) specialist paediatric centres in the UK • First time audit was available to a number of smaller-volume paediatric services that may admit patients with UC • Total 32 sites • 298 admissions audited • [Your site’s number of admissions]

6. Key indicators for inpatient care Your site level data for this table can be found in your local site report (Section 2, Table 3)

7. Key indicators for inpatient care Your site level data for this table can be found in your local site report (Section 2, Table 3) a Excludes from the denominator admissions that were not applicable to the question

8. Key indicators for inpatient care Your site level data for the first item below can be found in Section 2, Table 3 in your local site report. The remaining 3 items can be found within the national data table (from page 21). Individual question numbers are provided below

9. Outcomes of treatment escalation in UC

10. Inpatient care audit recommendations • All young people with UC should have their disease activity assessed (including use of PUCAI), and treatment should be initiated or escalated in those with active disease during all points of clinical interaction. Early intervention may prevent admission or reduce the need for surgery. • All patients with diarrhoea should have their stools sampled for both standard stool cultures and Clostridium difficile toxin testing. • All patients should have nutritional assessment on admission. • All patients on steroids for longer than 3 months should be considered for steroid-sparing agents.

11. Inpatient care audit recommendations • New therapies for paediatric UC should be actively investigated in high-quality clinical trials to tackle the number of patients who need hospital admission, including those who require surgery for failure of medical therapy. It is worthy of note that none of the patients in this category who were included in this audit were recruited to a clinical trial. • Anaemia should be actively investigated, and the cause should be identified and treated appropriately. • Further national audit in IBD should be commissioned.

12. Participation in inpatient experience • 1 January 2013 – 31 January 2014 • 96% (24/25) from specialist paediatric centres in the UK • First time audit was opened up to a number of smaller-volume paediatric services that may admit patients with UC • 32 sites in this round • 1687 questionnaires returned in total (1550 included in national analysis) • Your site’s number of questionnaires returned

13. Key indicators for inpatient experience

14. Key indicators for inpatient experience

15. Satisfaction of services among adolescents/non-adolescents a 9 missing responses; b 19 missing responses

16. Patient experience across core domains of acute inpatient care

17. Inpatient experience quotes

18. Inpatient experience quotes

19. Inpatient experience recommendations • All UC inpatients should receive input from specialist multidisciplinary teams with experience of managing such complex disorders. This will maximise the opportunity for provision of consistent and coordinated care. • Local IBD teams should consider whether the general nursing staff have sufficient awareness and knowledge of IBD, and initiate appropriate educational interventions and care pathways to support high‐quality nursing. The routine involvement of specialist IBD nurses in the day‐to‐day care of IBD patients at ward level is seen as a potential driver to improve the overall experience of nursing care. • All admitted patients with active UC require routine documentation of nutritional intake and weight. Nursing care plans should identify nutrition as a key element of day‐to‐day care. Food provided should be appropriate to patients’ dietary needs. Standard A5 of the IBD standards1 states that access to a dietitian should be available to all IBD patients. 1 IBD Standards Group. Standards for the healthcare of people who have inflammatory bowel disease (IBD Standards), 2013 update.www.ibdstandards.org.uk

20. Inpatient experience recommendations • Ward medical and nursing teams should review their local policies and current practice with regard to the frequency and effectiveness of pain assessment and provision of analgesia. • Discharge policies for IBD patients require local review to ensure that patients receive high-quality pre‐discharge information regarding medication, self‐care and follow‐up plans. In particular, improvements are needed in the provision of information about potential drug side effects and the warning signs of which to be aware after discharge.

21. Your three key areas for local change

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