Inflammatory Bowel Disease (IBD) Care Delivery Following Liver Transplantation for Primary Sclerosing Cholangitis

Dr Trivedi says:

‘Primary sclerosing cholangitis is an auto-immune liver disease which mainly affects young to middle aged people. We do not know what causes the disease neither do we have a treatment for it other than liver transplantation (LT). Up to 50% of patients with PSC may need a new liver; and whilst PSC is a rare disease, it accounts for around 10% of all liver transplants performed within the UK.

‘To add to this disease burden, the majority of patients with PSC also live with Inflammatory Bowel Disease (IBD). Persistent and active IBD is a significant and additional cause of morbidity following liver transplantation, with approximately 40% suffering a significant deterioration in bowel symptoms. Additionally, PSC patients have a high risk of developing colorectal cancer (CRC), which is 7 – 8 times greater than that of colitis alone, a risk that persists after liver transplantation.

‘Much of medicine today is often about sub specialties, focusing in on a specific area of a particular disease rather than the patient as a whole. What has always appealed to me about working in gastroenterology was that the speciality encompasses several organs, a wide range of disease pathways and so, as a gastroenterologist you need to learn a wide range of skills. In addition, because many of the diseases we see in gastroenterology are linked across organs you are forced to pull the lens out and treat the whole patient rather than the disease.

At the same time, and completely justifiably, patient expectations are rising, and they expect their doctors to discuss and share with them as much information as is available about their individual disease, the treatment pathways and choices and of course, the outcomes.

‘PSC provides a perfect example of this. It is an auto immune liver disease that often runs alongside a gut disorder – IBD – and the existence of one effects the outcome of the other. So, to treat PSC you have no choice but to treat the patient holistically, putting them firmly at the centre of the treatment pathway.

‘A recent survey conducted by PSC Support showed that nearly three quarters of patients feel the emotional impact of disease is greatest when dealing with uncertainty about what the future will bring. This is particularly true post-transplant with regard to treating their IBD. I see it therefore as vitally important that we look to find a way to improve this situation for PSC patients and the clinicians who treat them.

‘My project will offer the first nationwide audit of IBD care delivery in the transplanted PSC population, via a clinical research network comprising five liver transplants centres within the UK, with the specific aim of providing an evidence-based framework on which to base future treatment decisions in this group of patients.

‘The audit has been designed with three objectives in mind: adherence to current colorectal cancer surveillance standards (including screening data from before and after the transplant), to compare therapeutic interventions with outcomes to try to establish optimum treatment pathways to ensure best outcomes and finally to examine the influence of IBD activity on clinical outcomes.

‘Over the next year or so I will be collecting data from UK transplant centres and will make the effort to travel personally to all of them. This should not only ensure consistency of data and collection, but will also lessen the burden of data collection from the other centres – both of which will add to the value of the final project findings.

‘I hope that the results from this project will provide the evidence to influence and create an IBD care delivery pathway for post-transplant PSC patients, including the risks versus benefits of various treatments.’