Title: Management of patients with chronic liver disease admitted to hospital as an emergency
Funder: Department of Health and Social Care

Abstract: Liver disease is a serious and increasing health problem in the UK. However, people with liver disease often do not know that they are affected until 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 they get when they are in hospital, and after being discharged, varies greatly across the country. This variation in care has major effects on how long they will live. Survival of those who live in the most deprived areas is half that of those who live in the most well-off ones. We want to understand how and why the place where people live and the care that is available to them affect the way they are treated and their survival._x000D_ _x000D_ We will study the key points in the ‘journey’ that people with liver disease follow after a first emergency admission. We want to understand their experiences and why some but not others are treated by specialists or admitted to Critical Care Units, and how this changes depending upon what staff and facilities are available. We also want to see how variation in outpatient care after discharge makes a difference. If we can work out what care is linked to the best survival, we can begin to make sure that all people with liver disease get access to the best possible care, wherever they live._x000D_ _x000D_ To do this research, we will gather very detailed information about the arrangements for care given to people with liver disease in each hospital in England and then use the health information routinely recorded when people are treated in these hospitals. We will ‘link’ together information from different parts of the NHS into a single database so we can analyse the complete course of people’s illness (their journey). After removing names and all other identifying information, we will analyse data from more than 100,000 people with liver disease who had emergency admissions to NHS hospitals in England over more than a decade. Because the number of people is so large and many will have died, it is not possible to ask each person for permission to use their information. We will put safeguards in place so anyone who wants to ‘opt-out’ can do so. _x000D_ _x000D_ We will also undertake studies where researchers will observe how care is given to people with liver disease when they are in hospital. We will do this in hospitals in different parts of the country, where there are different levels of specialist care available. We will interview clinical staff to understand what influences the decisions they make when treating people with liver disease. Most importantly, we will also interview people with liver disease to understand how the diagnosis has affected them and their ability to engage with medical services. People with liver disease often have complex lives marked by poor living conditions, being discriminated against, and having bad experiences with health services. _x000D_ _x000D_ People with liver disease will join the research team to help us plan our project, monitor how the research is performed, and guide us in sharing its results. Through this research we hope to understand what clinical practices have the best results and how we can guarantee that they are delivered across the country. We can then develop recommendations for clinical practice that will ensure that all people with liver disease get access to the best possible care, wherever they live and whatever the cause of their liver disease.

Lay abstract: Research Question._x000D_ The research that we propose will provide a better understanding of three interacting complexities: the complexity of chronic liver disease (CLD) and its treatment options, the complexity of the life situation of many CLD patients, and the complexity of the healthcare system. Our results will inform the development of recommendations about how the services for patients with CLD can be made safer, more effective, and more patient-centred._x000D_ Background._x000D_ CLD is a major health issue, responsible for many preventable deaths and with close association to socioeconomic deprivation. People with CLD living in the most deprived areas of England have a mortality rate twice that of those in the most affluent ones. CLD often first presents in an emergency hospital admission (EA) with advanced disease; >25% of EA die within 60 days and 70% within 5 years. Specialist care during and after EA may reduce mortality but has geographic variation and unknown optimal configuration. Patients have a diagnosis carrying stigma, face discrimination that may impact care decisions, restrict access to important treatments and compromise engagement with healthcare._x000D_ Aims and Objectives. _x000D_ The project’s overall aim is to improve the national organisation and delivery of care for acutely ill people with CLD. It seeks to establish determinants of care processes and outcomes, recognising that these may be characteristics of treatments at patient level or characteristics of service provision at the provider level._x000D_ Methods_x000D_ Using a mixed-methods approach, we will investigate how and why patient outcomes vary after EA, specifically evaluating associations with different management approaches and organisational structures of service delivery and identifying barriers to the delivery of effective care._x000D_ The quantitative component will develop a detailed characterisation of liver service provision and practice across England from existing and newly collected data (Work Package 1 (WP1). This will be combined with linked patient-level data from relevant national datasets to follow the full ‘patient journey’ after >100K EA. With this dataset, we will explore pathways and outcomes after an EA, focusing on associations of patient and health service characteristics with treatments received during and after EA, including critical care and liver transplantation, and survival (WP2)._x000D_ The qualitative component will collect accounts of the lives of patients and experiences of CLD and its management, both in and beyond the health care system. Using ethnographic observations (WP3) and interviews (WP4) at hospitals serving different populations and with different service configurations, it will generate evidence for understanding interactions between patients with CLD and health care professionals, including patient experience. It will focus on interactions between patients and clinical staff, how care decisions are reached and the influences on patient engagement with healthcare._x000D_ Anticipated Impact and Delivery_x000D_ The research will identify operational characteristics associated with improved survival during and after EA and recommendations will be made to commissioners and providers for service reconfiguration. Our findings on influences on clinical decision making, patient experience and engagement will be shared with patients, clinicians and policy makers to promote changes in attitude and behaviour, and to raise awareness and empower patients and their families.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: ORAL AND GASTROINTESTINAL