All children with suspected inflammatory bowel disease (IBD) should undergo endoscopy to confirm diagnosis, requiring referral from secondary unit to a tertiary paediatric unit. Delay in diagnosis can occur at three stages:
Referral from primary care,
referral to tertiary care,
securing tissue diagnosis.
Children presenting to the Royal Cornwall Hospital (RCH) in Truro are referred to the Bristol Royal Hospital for Children (BRHC). Good working relationships between RCH and BRHC mean that the majority of referrals for suspected IBD go “straight to endoscopy” rather than initial clinical review. A review of the literature did not find previously set standards against which to assess time to diagnosis.
Index cases with IBD diagnosed 2010–2012 were identified from the gastroenterology clinic. Case notes were reviewed retrospectively to establish time to tissue diagnosis. Patients were then grouped by year for further analysis.
Over the 3 year period, through excellent working relationships between RCH and BRCH the total time to endoscopy and therefore diagnosis was reduced by more than 50%, from 99 days to 41 days. Individual cases with longer referral times were reviewed to look for avoidable factors. Referral pathways between surgeons or general paediatricians to special interest paediatrician were refined.
This study has highlighted the need to review such data, demonstrating areas of good practice as well as those requiring improvements. With this in mind, and in the absence of relevant benchmarks we propose other units collect this data, so that analysis and service improvement may occur on a national scale.