Article Text
Abstract
Introduction The increased risk of colorectal cancer in patients with primary sclerosing cholangitis (PSC) and inflammatory bowel disease (IBD) justifies an enhanced surveillance strategy with annual colonoscopy and dye spray or protocol biopsies. As symptoms are frequently mild in PSC-IBD colitis can be missed unless colonoscopy and biopsies are undertaken at diagnosis of PSC. We audited the colitis surveillance against audit standards published in the BSG and UK PSC guidelines.
Methods All UK PSC investigators were invited (March 2019-Jan 2021) to complete an electronic questionnaire encompassing demographics, diagnosis and bowel cancer surveillance data on each patient with PSC under the care of their service.
Results 1,795 patients across 30 centres (liver units n=1548, general gastroenterology units n=247) were included. Median age at diagnosis was 51 years and 56.4% were men.
Concurrent IBD was present in 1264 patients (70.4%) with 256 (20.3%) having had a colectomy. Where classified, colitis was present in 924/939 (98.4%) patients whereas isolated ileal disease was present in 15/939 patients. Pancolitis (Montreal classification E3) was the commonest disease distribution (673/939, 71.7%).
Most patients with IBD were followed up by an IBD specialist (n=616, 48.7%), 266 (21.1%) were followed by a general gastroenterologist, 236 (18.7%) by a hepatologist, whereas 15 (1.2%) patients were followed in a joint IBD/Hepatology clinic.
Among those with colitis without previous colectomy (n=743), 580 (78.1%) underwent annual colonoscopic surveillance; 30 (5.2%) with dye spray, 230 (39.7%) with biopsies and dye spray, and 252 (43.4%) with protocol biopsies alone.
Of those without documented IBD diagnosis, only 303/507 (59.7%) had this excluded by colonoscopy and biopsies.
Age<40 was associated with poorer compliance with colonoscopy surveillance. (P=0.023).
Conclusions IBD screening and colonic cancer surveillance is suboptimal in this large UK cohort of patients with PSC. This highlights the need for awareness of PSC-IBD management to address this unwarranted variation in care of people with PSC in the UK.