RT Journal Article
SR Electronic
T1 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
JF Frontline Gastroenterology
JO Frontline Gastroenterol
FD BMJ Publishing Group Ltd
SP 25
OP 31
DO 10.1136/flgastro-2012-100159
VO 4
IS 1
A1 Michael P Fitzgerald
A1 Sally G Mitton
A1 Aimee Protheroe
A1 Michael Roughton
A1 Richard Driscoll
A1 Ian D R Arnott
A1 Richard K Russell
YR 2013
UL http://fg.bmj.com/content/4/1/25.abstract
AB 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.