IBD organisational audit - Paediatric report - round four 2014

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This is the third paediatric IBD service provision report published from the UK IBD audit. It publishes national‐ and hospital‐level findings on the quality of IBD services throughout the UK.

The report findings enable the quality of paediatric IBD service provision at a national level to be compared with the national standards outlined in Standards for the healthcare of people who have inflammatory bowel disease (IBD standards).

Key recommendations

  1. There are demonstrable improvements in many aspects of care. However, for a number of important, patient‐focused quality indicators, progress has been slower, and there will need to be a national plan of action to ensure that IBD services continue to improve in these areas; this applies equally to adult and paediatric services.
  2. All sites should implement guidelines for the management of acute severe ulcerative colitis (ASUC), which include regular use of the paediatric ulcerative colitis index (PUCAI) in these patients, at the start of and throughout their inpatient stay.
  3. The outcomes of all ileal pouch surgery should be entered to the national pouch registry.
  4. Where sites have met the recommendations of the IBD standards, ongoing monitoring through national or local audit should be undertaken to maintain or improve services.
  5. All IBD services should aim to provide an annual review for all patients with IBD.
  6. IBD services should continue to enrol eligible patients to relevant clinical trials. A coordinated national clinical trial network for paediatric IBD would help to increase recruitment further.
  7. All services should capture clinical data about their IBD patients on a regularly maintained database to support the management of their care and work towards adoption of the IBD Registry.
  8. Patients should have a voice and direct involvement in the development of the IBD service. Services must be able to demonstrate that mechanisms are in place to obtain and respond to patient feedback. This needs to be addressed at local, regional and national levels and should have a place on the agendas of regional meetings.