Abstract
BACKGROUND AND AIMS: Primary sclerosing cholangitis (PSC) often co-exists with inflammatory bowel disease (IBD) and together they are associated with increased risk of complications, including cancer (hepatobiliary, colorectal, gallbladder) and death. Guidelines for follow up and surveillance vary, but our local guidelines advise annual surveillance with magnetic resonance cholangiopancreatography (MRCP), colonoscopy and ultrasound (US) (6 monthly if cirrhotic). We aimed to assess the quality of care in our PSC-IBD patients, including adherence to local surveillance guidelines, and resultant detection of complications, before and after the introduction of an integrated PSC and IBD out-patient service. METHODS: Data on management of PSC-IBD patients was collected retrospectively before, and prospectively following, the introduction of an integrated service. Descriptive comparisons of diagnoses, adherence to planned surveillance and outcomes were made between cohorts pre- and post-service redesign. RESULTS: Prior to the service re-design there was significant variability in care and poor adherence to guidelines. Introduction of an integrated PSC-IBD service led to 89 referrals with possible PSC-IBD at 36 months after service re-design. Detailed review led to appropriate identification of 68 PSC-IBD patients. There was significant improvement in surveillance with annual colonoscopy in 90%, MRI/MRCP in 81%, US in 35%, compared to 55%, 55% and 7% respectively in the baseline cohort. This translated to diagnosis and appropriate treatment of colonic dysplasia in 4 patients, colorectal cancer (CRC) in 4 patients and cholangiocarcinoma (CCA) in 2 patients. CONCLUSION: Establishment of an integrated out-patient service for PSC-IBD patients results in better compliance with guidelines, effective detection of complications, and appropriate management.