Management of People with Chronic Liver Disease

King’s Institute of Liver Studies has been awarded a research grant from the National Institute for Health and Care Research (NIHR) to investigate the management of people with chronic liver disease admitted to hospital as an emergency (MAP-CLD). The research group includes researchers from the Institute of Liver Studies at King’s College Hospital, the London School of Hygiene and Tropical Medicine (LSHTM), the University of Exeter and King’s College London.

What is the purpose of this research?

People with chronic liver disease (CLD) often don’t know that they have it until it causes sudden health problems, and they need to be admitted to hospital as an emergency. People admitted in this way are often very ill, and a quarter of them die within two months of coming into hospital.

The care that people with CLD get when they are in hospital, and after being discharged, varies greatly across the country. This may have major effects on how long they survive. People with CLD who live in the most deprived areas of England have a survival rate that is half that of people who live in the most well-off ones.

We want to understand how and why where people live, and what care is available to them, affects the way they are treated – and their survival. If we can work out what sort of care is linked to the best survival, we can begin to make sure that all people with CLD get access to the best care, wherever they live.

We want to study the most important points in the ‘journey’ that people with CLD follow after being admitted to hospital. For example, we want to understand why some people but not others are treated by specialist doctors or are admitted to Intensive Care Units, and how this changes depending upon what staff and facilities are available, and the background of the people who have CLD.

How will these research questions be answered?

Our project has two major parts. One will analyse NHS health information using a method called ‘data linkage’. The second will be a ‘social science’ study where we will observe how care is given to people with CLD when they are in hospital or in outpatients. Importantly, we will interview people with CLD at hospitals and in homes in different parts of the country to understand how the diagnosis has affected them and their ability to engage with medical services.

The researchers in each part of the project will work closely with one another – and with people who have CLD – to get the best possible understanding as to how care may be improved.

What is data linkage?

To do the ‘data linkage’ research, we want to use the health information recorded by the NHS when people are admitted to hospital or seen in outpatients. This information includes the sorts of illnesses that they have, where and why they were admitted to hospital, and which medical teams looked after them. This information is collected and securely stored so that the NHS can manage its services and plan for the future. It can also be used for research.

We hope to ‘link’ together information from different parts of the NHS into a single database so we can analyse the complete course of people’s illness. All identifying information like names, dates of birth and address are removed before analysis begins. We have published a Study Privacy Notice. where you can find more detailed information about the places where data will be collected from, and how this ‘linkage’ is done.

We hope to study the information from as many as 100,000 people with CLD who were admitted to NHS hospitals as emergencies over a 10-year period. Because the number of patients is so large, and because many will have died, it is not practical to ask each person for their permission to use their information.

The majority of people with CLD we consulted were happy for their information to be used for research when identifying information had been removed. We have made it easy for people to ‘opt-out’ if they do not want their information to be used in this way (see Study Privacy Notice). People with CLD have joined the research team to help plan the project, monitor how the research is performed and guide how results are shared.

The database we develop won’t contain any identifying information about people with CLD and will be stored securely at the LSTHM. It will only be used for NHS research to help people with CLD.

How will we use linked data?

Using computerised analysis of the linked data, we will first look at the care received by people with CLD when admitted to hospital as an emergency. We will examine how their care and survival is affected by factors such as their age, sort of CLD, socio-economic status and the area where they live, and by the medical team delivering their care and the facilities available.

We will look at how outpatient care is delivered to people after their hospital admission, to see how the timing and specialism of care is related to how well they are looked after. We will also examine what factors make it more or less likely for someone with CLD to be referred for other specialist treatments such as liver transplantation.

What is the social science study?

The social science study explores the understandings and experiences of those who receive and provide care for CLD. To understand how decisions about care are made and how different people’s experiences might impact on care, the study has two components: in-depth interviews with outpatients and an ethnography of liver care services.

Ethnography is a research method often used in social science research and involves a researcher being present in the site they are studying. This allows the researcher to observe (and at times participate in) what happens in sites of study over an extended period. Researchers can look at what people do in what context, when and where, how they do it and other factors that may be involved. While interviews allow an in-depth exploration of what people think and say they do, ethnography can identify themes and patterns that may be less visible to the people directly involved.

Ethnography will allow us to directly observe how decisions about care are made and the wider context in which these decisions occur. We will undertake ethnography in four different hospitals providing care for CLD across the UK – in London, Kent, Lancashire, and Devon. This allows us to gain a sense of how care services and decisions about care may differ. These sites have been chosen as they reflect different kinds of service provision and populations as well as geographical spread.

We will sit in on clinical discussions and team meetings, spending time both in wards and in outpatient clinics. We will have posters displayed in all clinical areas where observations are taking place, and your doctor will ask you if you are happy for this to occur. You should only take part if you want to and choosing not to take part will not disadvantage you in any way. We will also interview suitable, willing inpatients and clinical staff about their experiences. All interviews carried out throughout the study will be confidential and the interviewees will not be identified when we write up our findings.

We will also interview outpatients with CLD. This will allow us to explore individual circumstances and experiences in more depth, including wider impacts that CLD and CLD care has on people’s lives, and how people’s lives might in turn impact on their CLD and CLD care. People with CLD often report experiencing stigma in relation to their condition and we want to investigate how and when this occurs and its impact on care. We have designed our interviews to allow patients to raise those issues which are most important to them, and we will discuss what we find with patient groups.

We want to speak to people who have been admitted to hospital as an emergency, but we will also include patients who have different types of CLD. This will allow us to look at a range of different kinds of experiences and patient journeys.

We will also use research published in similar and related areas to help us understand our themes as well as the findings and discussions taking place as part of the data linkage work.

If you would like any further information about the research or have any comment to make, please email the research team at [email protected]