Why does polycystic liver disease affect people with polycystic kidney disease in different ways?
Dr Matthew Gittus from Sheffield Teaching Hospitals NHS Foundation Trust has been awarded a £19,000 PKD driver project grant to understand why polycystic liver disease (PLD) affects people with autosomal dominant polycystic kidney disease (ADPKD) differently and explore variations in care across the UK. This project forms part of the PKD Partnership, led by Kidney Research UK and the PKD Charity.
Polycystic liver disease and polycystic kidney disease
Polycystic liver disease (PLD) is a condition in which many fluid-filled sacs, called cysts, grow in the liver.
Some people have PLD on its own. More commonly, it occurs alongside autosomal dominant polycystic kidney disease (ADPKD), an inherited condition that causes cysts to grow in the kidneys.
As liver cysts grow, they can make the liver much larger than normal. This can put pressure on nearby organs, leading to symptoms such as pain or discomfort, bloating, nausea, acid reflux and shortness of breath. These symptoms can have a major impact on quality of life, making everyday activities more difficult.
Improving our understanding of polycystic liver disease in ADPKD
People living with polycystic liver disease (PLD) can have very different experiences. While some have few symptoms, others develop an enlarged liver that can make everyday life difficult.
People living with PLD have also reported that access to treatments can vary depending on where they receive care.
In this study, Dr Matthew Gittus and the team aims to find out why this happens and whether people receive different treatments depending on which hospital they attend.
Looking for answers
Matthew and the team will use information from a UK-wide registry of people living with polycystic liver disease to better understand why the condition affects people so differently.
By analysing information collected from hospitals across the UK, they hope to identify why some people develop more severe symptoms than others and what factors might be linked to faster disease progression. They will also investigate whether people are more or less likely to receive certain medicines or treatments depending on where they receive care, including procedures such as cyst drainage, liver surgery and liver transplantation.
"People living with polycystic liver disease can have very different experiences, and we don't yet fully understand why. By bringing together information from people across the UK, we hope to identify the factors that lead to more severe disease and ensure everyone has access to the best possible care, regardless of where they are treated." Dr Matthew Gittus.
What is a registry?
A registry is a secure database that collects information from people with a particular condition. It can include information such as medical history, scan results, genetic test results, treatments and how the condition affects daily life.
By bringing together information from many people, registries help researchers better understand diseases and identify ways to improve care.
What could this mean for kidney patients?
By improving our understanding of polycystic liver disease in people with ADPKD, this research could help doctors identify who is most likely to develop severe liver symptoms and who may benefit from earlier treatment or closer monitoring.
Comparing care and outcomes between hospitals will also show whether people with ADPKD are receiving different treatments depending on where they live, helping to identify opportunities for more consistent, evidence-based care across the UK.
Meet the researcher
“I am a nephrology doctor and researcher at Sheffield Teaching Hospitals NHS Foundation Trust, where I care for people living with kidney disease and study how we can improve the way rare kidney conditions are understood and treated.
I became interested in autosomal dominant polycystic kidney disease (ADPKD) through my clinical work, seeing the impact that it can have on people and their families. While much of the focus in ADPKD has traditionally been on kidney problems, I became increasingly interested in the effects of complications outside the kidneys.
One of the things that stood out to me was how differently polycystic liver disease (PLD) can affect people. Some individuals may have many liver cysts but few symptoms, while others develop significant liver enlargement that can have a major impact on their quality of life. We still do not fully understand why these differences occur or whether everyone has equal access to the treatments they need.
My research aims to understand these differences and help improve care for people living with ADPKD. By studying information from people across the UK, we hope to identify factors that influence disease progression and understand how care varies between hospitals.
Ultimately, I hope this work will help us provide more personalised care, so that people living with ADPKD and PLD receive the right support and treatment at the right time.” Dr Matthew Gittus
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