Surveillance evaluation of Fontan associated liver disease
Research type
Research Study
Full title
Development and Evaluation of a Surveillance Guideline for Liver Disease amongst the Adult Fontan Population
IRAS ID
332578
Contact name
Matthew Hickman
Contact email
Sponsor organisation
University of Bristol
Duration of Study in the UK
1 years, 4 months, 31 days
Research summary
Some children are born with heart defects that need surgery. One type of surgery is called a Fontan procedure. This surgery is not a permanent fix, but as we learn more, patients are living longer and with better quality of life. However, a long term consequence of the surgery can be liver disease. This happens because of changes in blood flow in and out of the liver after surgery. The Bristol Heart Institute cares for a large number of patients who have had Fontan procedures.
The Heart and Liver teams are working together to understand how best to look after these patients at risk of liver disease. We want to understand how best to look for liver disease and therefore offer possible treatments. I am focusing on the development of high pressure in the blood vessels around the liver (portal hypertension) and potential cancers in the liver (lesions). To find these, I use two common tests, an endoscopy (camera test of the gullet and stomach) and an ultrasound scan.
Introducing new health concerns can be quite scary for patients. I will carry out patient interviews to understand patients’ views and to find out what we can do to reduce anxiety. With help from patients, we will design a guideline that is acceptable to both healthcare professionals and patients to manage liver disease in the adult Fontan population.
By looking closely at the patient experience in Bristol, we will focus on their ideas, concerns and expectations and we would like to expand the work to look more broadly at patient care across the country and then to set up an International group to collect information and resources on Fontan liver disease to improve management and treatment.
REC name
Wales REC 3
REC reference
24/WA/0264
Date of REC Opinion
9 Oct 2024
REC opinion
Further Information Favourable Opinion