Care improving for children with crohn’s and colitis, but could be better

The second round of the UK Paediatric Inflammatory Bowel Disease Audit, carried out in 2010, shows that care for children with ulcerative colitis (UC) and Crohn’s disease (CD) has improved greatly across a wide range of measures since the previous audit in 2008. 

• There has been a significant increase in the number of paediatric IBD patients being seen by specialist paediatric IBD Nurses during their admission
• Rates of readmission have fallen for paediatric IBD patients across the 2008 and 2010 rounds of audit.

There is however still room for improvement, particularly in the following areas:

• All children with IBD need to be tested for infections during a disease flare, especially for Clostridium Difficile (CDiff)
• More children with IBD should see a specialist paediatric IBD nurse during their stay in hospital
• More children should see a dietician to optimise nutrition

Inflammatory Bowel Disease is increasing and now affects one in 200 people in the UK, with profound life changing effects.  The total cost of IBD to the NHS was estimated at £720 million in 2006.

The UK IBD Audit (2010) is commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP) with additional funding from Healthcare Improvement Scotland. The audit is co-ordinated by the Clinical Effectiveness and Evaluation unit (CEEu) of the Royal College of Physicians of London on behalf of a collaborative partnership between gastroenterologists (the British Society of Gastroenterology), colorectal surgeons (the Association of Coloproctology of Great Britain and Ireland), patients (Crohn’s and Colitis UK), physicians (the Royal College of Physicians of London) and paediatric gastroenterologists (The British Society of Paediatric Gastroenterology, Hepatology and Nutrition). 

Paediatric audit key findings

• There has been a promising increase since 2008 in the numbers of paediatric IBD patients being seen by        specialist paediatric IBD Nurses during their admission (UC – from 61.9%-70.7%, CD – from 58.3%-71.6%)
• There is a significant increase in the rates of stool sample collection in UC patients 
• Only 20% (13/66) of Ulcerative Colitis patients had a formal assessment of their disease activity made  on their admission to hospital
• There are more surgical procedures now being undertaken laparoscopically or laparoscopically-assisted
• Readmission rates in the two years prior to the audited admission have fallen significantly in CD  patients, with a numerical but not statistically significant fall also demonstrated for UC patients
• There has been a very encouraging, highly-significant increase in the number of CD patients being weighed during their admission in 2010 – now 99%, suggesting that this is now largely a part of routine practise. The increase in inpatients being seen by a dietician would suggest that important dietary factors in CD are continuing to be given further emphasis in patient care although it is still a concern that 20% of patients weren’t seen by a dietician.

Dr Sally Mitton, consultant paediatric gastroenterologist, St George’s Hospital, London and British Society of Paediatric Gastroenterology, Hepatology and Nutrition representative on the UK IBD Audit said: 

‘There are two very encouraging messages from the audit of paediatric patients with IBD.   First all the centres that participated in the first round have done so again; second, data from the two rounds already demonstrate improvement in several parameters of patient care, highlighted above.  This proves the commitment of the UK paediatric gastroenterology community to the audit and the benefit of repeating the process.  This augurs well for continuing participation in the ongoing biologics audit and the next complete round.’ 

Dr Richard Russell, consultant paediatric gastroenterologist, Yorkhill Hospital, Glasgow and British Society of Paediatric Gastroenterology, Hepatology and Nutrition representative on the UK IBD Audit said:

‘This is the second time children and young people have had their care assessed by taking part in the audit. At a time when more children are being diagnosed with IBD it very encouraging to see that less children are being admitted to hospital because of their IBD and when they are admitted more are being seem by an IBD nurse. Children’s nutrition and growth is a very important focus of care and it is therefore reassuring to see the vast majority of patients with Crohn’s disease are both weighed and seen by a dietician. Our focus between now and the next audit will include implementing measures to improve on screening children for infection when they are admitted to hospital with IBD and increasing the use of simple tests to regularly assess disease activity.’

Mr Richard Driscoll, Chief Executive, Crohn’s and Colitis UK, said:

‘It is very pleasing to see that more children who have Crohn’s disease or Ulcerative colitis are now being referred to a specialist paediatric gastroenterology centre and that readmission rates have fallen.  There are still areas for improvement, for example 20% of children weren’t seen by a dietitian during their stay in hospital, and we hope that the national Audit will be able to continue beyond 2012 and help to sustain improvements in the services and clinical care for children who have inflammatory bowel disease.’

Notes

For further information and to interview Drs Mitton or Russell, please contact RCP PR Manager Linda Cuthbertson on 020 3075 1254, 07748 777919 or linda.cuthbertson@rcplondon.ac.uk.

Report recommendations in full

•  As highlighted in the 2010 Paediatric Organisational Audit Report, 71% of sites do not have formal arrangements for annual review. The implementation at a national level, of an agreed systematic annual review would avoid the likelihood of routine data collection items such as smoking and pubertal status being overlooked.
•  The local policy for thrombus prevention (including use of heparin) in paediatric patients with IBD should be reviewed by each paediatric IBD service
•  In line with ESPGHAN/ECCO recommendations, every paediatric patient admitted as an emergency with ulcerative colitis should have a PUCAI score recorded on admission and daily thereafter as a guide to the need for medical rescue therapy or colectomy
•  Local hospitals should develop a practice where testing for Clostridium difficile toxin is routinely carried out alongside tests for SSC in all stool samples sent for IBD patients admitted with diarrhoea
•  All paediatric CD inpatients should be seen by a dietician during their admission