Alcohol-related Liver Disease

Alcohol-related Liver Disease encompasses a range of conditions including fatty liver, fibrosis, cirrhosis, portal hypertension and chronic liver failure, frequently accompanied by sudden episodes of acute of chronic cholestatic liver failure (termed alcoholic hepatitis).

About this PSP

This PSP was jointly funded by the National Institute for Health and Care Research and the British Society of Gastroenterology. Alcohol-related liver disease has become the most common type of alcohol-related death in England. In this PSP, patients, carers and health professionals were asked for their unanswered questions around the diagnosis, treatment and care of alcohol-related liver disease. Over 230 responses to the original survey were received from across the UK and the 25 most important questions were agreed jointly between patients, carers and clinicians at a priority setting workshop.

The 2018 - 23 research priorities for the BSG's Liver Clinical Research Group are the Top 10 priorities from the Alcohol-related liver disease PSP.

The Alcohol-related Liver Disease Top 10 was published in November 2016.

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“The number of people with alcohol-related liver disease has been increasing over the last few decades: death rates have risen considerably in this time and alcohol is now one of the most common causes of death in the UK. So this is an important area for research. It’s vital that we bring together patients, carers and clinicians to decide jointly what the priorities for research are in this area, and the NIHR is pleased to support the James Lind Alliance in doing so.”
Professor Dame Sally C. Davies FRS FMedSci, Chief Medical Officer at the time of the PSP
“We covered some very complex issues regarding alcohol-related liver disease… Using the premise that everyone was an equal partner in this process meant that all views were acknowledged purposefully as we moved forward to agree our priorities. It wasn’t easy but it was very rewarding. To listen and learn from each other whilst respecting each other’s knowledge and viewpoint was key to such a very successful day… This illness and its consequences, is without doubt one of the most serious issues of our time…”
Dawn Pallant, who attended the priority setting workshop in September 2016

Further information

Articles and publications

Find out more about related publications from the Alcohol-related Liver Disease PSP

News from this PSP

NIHR and BSG launch top 10 research priorities for alcohol-related liver disease

New survey launches to prioritise research into alcohol-related liver disease

New survey launches to identify alcohol-related liver disease research uncertainties

New partnership to prioritise alcohol-related liver disease treatment uncertainties

Partners and support

The Alcohol-Related Liver Disease (ARLD) Priority Setting Partnership (PSP) brings together organisations and individuals who represent the following groups:

  • people at risk of, or worried about ARLD
  • people who have or have had ARLD
  • carers, relatives and friends of people who have or had ARLD
  • health and social care professionals with clinical experience of ARLD

Our partner organisations played a vital role by helping us to promote the survey, and by getting involved in the priority setting process.

"Liver Disease is currently the fifth biggest killer disease in the UK and still the most common cause of liver disease is alcohol related - consequently this Priority Setting Partnership is extremely important in developing the most appropriate research to benefit those with and affected by ARLD and support all issues relating to ARLD from prevention and early detection through to best possible treatment and care."

Andrew Langford, Chief Executive, British Liver Trust at the time of the PSP

“The gap between the burden of liver disease from alcohol and research efforts in comparison to other causes of liver damage has been stark, and so I really welcome this initiative. In particular it is good to see an emphasis on research that is important to patients”

Professor Sir Ian Gilmore, Chair, Alcohol Health Alliance UK

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Who was involved

The Steering Group was responsible for coordinating and organising the priority setting process.

Dr Allison undertook undergraduate training at St Mary’s Hospital Medical School (Imperial College), London including research into Alcohol-related liver disease. He completed postgraduate training at Oxford, Imperial and Cambridge, followed by a PhD in the field of Immunology in Cambridge.

Simran Arora has specialised in liver services at Royal Free London NHS Foundation Trust since 2008. She provides nutrition support for patients with alcoholic liver disease and assesses and supports patients on the liver transplant waiting list. Her research interests include nutrition screening patients with liver disease for which she has published and presented at national and international conferences. She has supported the British Liver Trust writing literature for ‘diet and liver disease’.

Aisling Considine is a Senior Liver Pharmacist at King’s College Hospital NHS Foundation Trust. She qualified from Brighton University in 2004 and went on to complete her pre-registration and postgraduate clinical qualifications at King’s College Hospital. She qualified as an independent prescriber in 2010 and currently works as a prescriber within the Viral Hepatitis Team at King’s. She is a current committee member for the UK Clinical Pharmacy Association Gastroenterology and Hepatology group.

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Ranjita Dhital is a pharmacist and PhD researcher at King's College, London. She is interested in enhancing service users’ engagement with their health and the health service. In particular in utilising the untapped potential of community pharmacists and their staff to prevent and reduce harm caused by alcohol. Ranjita has practised in various pharmacy roles, including community pharmacy, a specialist role in the management of substance misuse for a mental health trust and a position at a public health directorate. She has presented her work at national and international conferences and published in peer reviewed journals.

Diane’s Public Relations career was abruptly ended by her becoming totally alcohol dependent. Over time, however, and with a good deal of NHS treatment and support, she detoxed and then entered recovery. Since then she has been deeply involved in a number of groups and committees in the Royal College of Psychiatrists. She also assists on a regular basis in lecturing to 4th year students at St. George’s Medical School in South London when they are studying addictions.

Diane is a member of the College’s Parliamentary Liaison Committee which aims to raise the profile of the Royal College of Psychiatrist’s work amongst parliamentarians and other stakeholders. She is also a member of the Addictions Faculty Patients and Carers Liaison Group and has until recently been a member of the Service Users Recovery Forum.  Diane is a service-user who attends an alcohol treatment centre now as an after-care patient.

At the time of the PSP Andrew Langford was the CEO of the British Liver Trust. The primary objectives of the Trust are:

- support for people with, and affected by, liver disease
- advocacy at all levels including local and national government for the improvement of holistic health services
- the development of a national prevention and liver health campaign – Love Your Liver – which raises awareness of liver disease and provides a national screening roadshow.

Beccy Maeso is a Senior Research Manager at the National Institute for Health and Care Research. She leads the small team that coordinates the James Lind Alliance and oversees the coordination of the JLA Priority Setting Partnerships, with responsibility for handling enquiries, determining the readiness of PSPs to commence the priority setting process, managing communications and coordinating the work, training and development of the JLA Advisers. She has been part of the NIHR since 2010 with responsibility for a range of projects including work on adding value in research, stakeholder engagement and identification of research topics.

Dr Zul Mirza is a Consultant in Emergency Medicine and the Royal College of Emergency Medicine co-lead on alcohol. He is past President of Emergency Medicine at the Royal Society of Medicine. He has lectured both nationally and internationally on alcohol. He sits on the Medical Council on Alcohol and a member of the Alcohol Health Alliance.

Dr Lynn Owens is a Nurse Consultant, a role comprising clinical practice and education, research and strategic development.

Lynn provides nursing leadership for an alcohol service across primary and secondary care provision in Liverpool. Her academic studies at The University of Liverpool focus on the effects of alcohol treatments and interventions within differing health care contexts.

Since June 1994 Dr Stephen Ryder has been a consultant Physician in Hepatology and Gastroenterology at the Nottingham Digestive Diseases Centre and Biomedical Research Unit. He is also Clinical Director for the East Midlands Cancer Network.

One of his major clinical and research interests is hepatitis C infection including the natural history of liver fibrosis in chronic hepatitis C infection.

Dr Ryder is Vice President of the British Society of Gastroenterology.

Professor Sheron is an academic hepatologist at the University of Southampton. He has a particular interest in the potential for evidence-based alcohol policies to reduce alcohol-related harm. Professor Sheron has worked with the Alcohol Health Alliance, Royal College of Physicians, EU Commission, the British and European Societies for the Study of Liver Disease and the British Society of Gastroenterology to advocate for strategies to address the rising tide of liver and alcohol-related deaths.

Dr Sinclair is Associate Professor in Psychiatry at the University of Southampton. She leads the alcohol care team at University Hospital Southampton and the alcohol priority work stream at the Wessex Academic Health Science Network (AHSN). Her research is clinically focussed examining factors which have an impact on clinical outcomes in terms of prevention, engagement and response to treatment.

Amy Street is providing administrative support for the Alcohol Related Liver Disease PSP.

Sheela Upadhyaya is an experienced expert facilitator and mentor with over 15 years of experience of the NHS. She supports James Lind Alliance PSPs as Chair and has a history of working in situations where she brings together patients, clinicians and other stakeholders to establish common goals and objectives. Her passion is developing and empowering people and the JLA prioritisation process is a constructive process in which to do just that.

Lynda has experienced the death of three family members, including her partner, from alcohol-related and genetic liver disease. She was appointed Trustee of the British Liver Trust in 2009. Her working career began in medical research, followed by senior board positions in the marketing/social research and advertising industries. She currently runs a marketing research consultancy.

Top 10 priorities

  1. What are the most effective ways to help people with alcohol-related liver disease stop drinking?
  2. What are the most effective ways of delivering healthcare education and information about excessive alcohol consumption, the warning signs and the risks of alcohol-related liver disease to different demographics (including young people)?
  3. What is the most effective model of community-based care for patients with alcohol-related liver disease?
  4. What is the patient's experience of alcohol-related liver disease?
  5. Do attitudes to perceived 'self-induced illness' amongst healthcare professionals affect treatment, care provision and compassion for individuals with alcohol-related liver disease?
  6. What are the most effective strategies to reduce the risk of alcohol-related liver disease in heavy drinkers?
  7. Does the stigma associated with alcohol misuse affect the willingness of people with alcohol-related liver disease to ask for help?
  8. What interventions improve survival in individuals with complications of advanced alcohol-related cirrhosis?
  9. How should depression be managed in the context of alcohol-related liver disease?
  10. What models of involvement of palliative care services in advanced alcohol-related liver disease are most beneficial?

The following questions were also discussed and put in order of priority at the workshop:

  1. Are there any early signs of alcohol-related liver disease?
  2. What are the factors that determine who gets significant/advanced alcohol-related liver disease (affect progression)?
  3. What effect would greater alcohol-related liver disease education/training of GPs and secondary care clinicians have on the mortality outcome of alcohol-related liver disease patients?
  4. What is the relationship between alcohol-related liver disease and mental illness?
  5. What dietary recommendations or supplements (including herbal and vitamins) are beneficial in patients at risk of or with established alcohol-related liver disease?
  6. What effect does combining treatment of the liver disease with psychiatric support have on prognosis/mortality?
  7. What are the most effective messages and how are they best delivered in helping a patient with alcohol-related liver disease understand the condition and the importance of abstinence?
  8. Are there any effective treatments for alcohol-related liver disease apart from abstinence from alcohol?
  9. What are the obstacles for individuals to modification of their alcohol consumption?
  10. What lifestyle interventions improve outcomes in alcohol-related liver disease?
  11. What level and pattern of drinking behaviour affects the risk of getting alcohol-related liver disease (taking into account other risk factors for alcohol-related liver disease)?
  12. To what degree is established liver disease reversible?
  13. What are the most effective interventions delivered in combined clinics in the setting of secondary care for alcohol-related liver disease?
  14. What interventions improve survival in severe alcohol-related hepatitis?
  15. Is there a difference between the outcome of alcohol-related liver disease patients treated by specialised liver disease units/hepatologists versus general gastroenterologists?

The remaining uncertainties identified by patients, carers and health professionals who responded to the original survey were (in no order of priority):

  • Do specific interventions involving family members/social support improve maintenance of alcohol abstinence in individuals with alcohol-related liver disease?
  • Does the type of alcohol (e.g. wine, beer, spirits etc.) affect the risk, or progression, of alcohol-related liver disease?
  • Does the media portray excessive drinking in an inappropriately positive way and does this affect behaviour?
  • What is the impact on drinking behaviour of the ready availability of alcohol in social environments, at home and elsewhere?
  • Why is alcohol-related liver disease more prevalent in low socioeconomic groups?
  • What role do dietary factors have in susceptibility and prevention to alcohol-related liver disease?
  • What interventions best aid patients with alcohol-related liver disease maintain and manage employment?
  • What is the best screening test for alcohol-related liver disease and how should it be applied?
  • Should there be routine screening for alcohol-related liver disease?
  • Should screening for primary liver cancer in patients with alcohol-related liver disease be routinely performed?
  • What is the best method for diagnosing alcohol-related liver disease and where is this best done?
  • What are the needs and best methods for delivering support to care-givers both for themselves and the patient with alcohol-related liver disease?
  • What are the optimal ways of staging alcohol-related liver disease?
  • What medications for other conditions are the most effective and safe for use in patients with alcohol-related liver disease?
  • What are the best means of diagnosing hepatic encephalopathy (HE)/what is the role of new methods of diagnosing HE?
  • What factors in a person with alcohol-related liver disease indicate a favourable outcome following liver transplantation?
  • What treatments are safe and effective in treating alcohol withdrawal in patients with alcohol-related liver disease?
  • What are the appropriate quality markers for care in alcohol-related liver disease?
  • Which liver-assist machines can help survival to liver transplantation?
  • What is the best way of identifying which patients with severe alcohol-related liver disease needing intensive care support will survive?

Document downloads

For full details of all of the questions identified by this PSP, please see the document below.

Alcohol-related-Liver-Disease-PSP-final-data-sheet.pdf

Alcohol-related-Liver-Disease-PSP-final-report.pdf

Alcohol-related-Liver-Disease-PSP-final-data-sheet.pdf

Example-PSP-project-plan-from-Alcohol-related-Liver-Disesase-PSP.pdf

ARLD-postcard.pdf