‘What are the most effective ways to help people with alcohol-related liver disease stop drinking?’ is the top priority question for alcohol-related liver disease research, according to new results from the JLA’s Alcohol-Related Liver Disease Priority Setting Partnership (PSP).
Research into alcohol-related liver disease has been highlighted as a priority by the NIHR, which jointly funded the James Lind Alliance (JLA) PSP with the British Society of Gastroenterology (BSG). Alcohol-related liver disease has become the most common type of alcohol-related death in England. It accounted for 64% (4,441) of all alcohol-related deaths in 2011, and for 65% and 62% of male and female alcohol-related deaths respectively - most among those aged 50-59 years.
Simon Denegri, NIHR National Director for Patients and the Public in Research, said:
“The more we understand the priorities and concerns of people with alcohol-related liver disease, their carers and those health professionals treating them, the more we can ensure that the research that is funded is relevant to their needs. So I am delighted to see the results of the NIHR and BSG PSP have launched today. I hope it will be the basis for future research collaborations between patients, carers, health professionals and researchers leading to new ways to care for and treat people with this terrible disease.”
The PSP was set up through the JLA last year (2015). Data were collected through a survey asking patients, carers and health professionals for their unanswered questions around the diagnosis, treatment and care of alcohol-related liver disease. Over 230 responses were received from across the UK, and the top 25 questions were then taken to the JLA Alcohol-Related Liver Disease PSP workshop in September, where health professionals, patients and carers worked collaboratively to reach the following final Top 10:
- What are the most effective ways to help people with alcohol-related liver disease stop drinking?
- 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)?
- What is the most effective model of community-based care for patients with alcohol-related liver disease?
- What is the patient's experience of alcohol-related liver disease?
- Do attitudes to perceived 'self-induced illness' amongst healthcare professionals affect treatment, care provision and compassion for individuals with alcohol-related liver disease?
- What are the most effective strategies to reduce the risk of alcohol-related liver disease in heavy drinkers?
- Does the stigma associated with alcohol misuse affect the willingness of people with alcohol-related liver disease to ask for help?
- What interventions improve survival in individuals with complications of advanced alcohol-related cirrhosis?
- How should depression be managed in the context of alcohol-related liver disease?
- What models of involvement of palliative care services in advanced alcohol-related liver disease are most beneficial?
The full list of verified unanswered questions, is available on the alcohol-related liver disease PSP website: www.psp.nihr.ac.uk/alcohol-related-liver-disease/results
Dr Steve Ryder, Chair of the British Society of Gastroenterology (BSG) /British Association for the Study of the Liver (BASL) Research Development Group, said:
“Alcohol-related liver disease (ARLD) is a disorder that has had disproportionately little research attention or spending in the past, despite its impact on patients and their families. ARLD remains the second highest cause of years of life lost in young men. It is a huge step forward that the NIHR with BSG have been able to help set a series of key research questions which cover all aspects of ARLD, from its stigma to the potential areas for new treatments. BSG believes that this provides a key step in ensuring that people and carers of people with ARLD will gain access to better understanding of the disorder and better treatments in the near future. We look forward to calls for research to answer these questions.”
Dawn Pallant, a patient involved in the Alcohol-related liver disease PSP workshop, said: “It was a real privilege to be involved in this day organised by the JLA. It is extremely unusual and an extraordinary opportunity for all of these people (patients, doctors, medical specialists, carers, charities and potential funding bodies) to have the time to meet with the prime objective of setting priorities to fund research. “
The Top 10 priorities encourage new research into alcohol-related liver disease and guide researchers to answer the questions that are important to those affected by the disease. To find out more about the work of this JLA PSP, please visit www.psp.nihr.ac.uk/alcohol-related-liver-disease.