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The organisation and structure of inflammatory bowel disease services for children and young people in the UK in 2010: significant progress but still room for improvement
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  1. Michael P Fitzgerald1,
  2. Sally G Mitton2,
  3. Aimee Protheroe3,
  4. Michael Roughton3,
  5. Richard Driscoll4,
  6. Ian D R Arnott5,
  7. Richard K Russell1
  1. 1Department of Paediatric Gastroenterology, Yorkhill Hospital, Glasgow, UK
  2. 2Department of Paediatric Gastroenterology, St Georges Hospital, London, UK
  3. 3Clinical Effectiveness and Evaluation unit (CEEu), Royal College of Physicians of London, London, UK
  4. 4Crohn's and Colitis, St Albans, UK
  5. 5Gastrointestinal Unit, Institute of Genetics and Molecular Medicine, University of Edinburgh, Western General Hospital, Edinburgh, UK
  1. Correspondence to Dr Richard K Russell, Department of Paediatric Gastroenterology, Yorkhill Hospital, Dalnair Street, Glasgow G3 8SJ, UK; richardrussell{at}nhs.net

Abstract

Background Inflammatory bowel disease (IBD) is becoming more common in children. While treatment options remain limited the appropriate organisation and delivery of services are an integral part of good care.

Methods All eligible UK paediatric sites were invited to submit data for organisation of paediatric IBD services as of 1 September 2010. Comparison, when relevant, was made with the previous paediatric audit (2008) and the concurrently running adult audit.

Results 24/25 (96%) of sites submitted data. The median number of patients managed and the median number of new IBD (ulcerative colitis and Crohn's disease only) cases per annum was 178 (IQR 136–281) and 32 (IQR 23–50), respectively. There was an increase in the IBD workforce including whole-time equivalent (WTE) IBD nurses (1.0 vs 1.5 WTE nurses, p=0.02). 1023 patients 16 years and younger were looked after in the 202 adult sites who submitted data; only 78/202 sites indicated they cared for 16-year-old and younger children; approximately half of these 78 sites had age-appropriate support facilities. Most paediatric sites have access to urgent endoscopy (83%), telephone advice (100%) and urgent clinic appointments (91%). Most sites did not have: shared care pathways with primary care (74%), annual reviews (71%), real time patient management systems (83%) and research network trial participation (78%).

Conclusions Many aspects of paediatric IBD care in the UK are good and have shown significant improvement over recent years. There are areas in need of further change and specific regional and national action plans should address identified deficiencies before any future audit of paediatric and adult IBD services.

  • CROHN'S DISEASE
  • PAEDIATRIC GASTROENTEROLOGY
  • IBD CLINICAL
  • INFLAMMATORY BOWEL DISEASE
  • ULCERATIVE COLITIS

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