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

Can you help? We are inviting anyone affected by alcohol-related liver disease to help shape the research agenda. An NIHR and British Society of Gastroenterology funded Priority Setting Partnership (PSP), organised through the James Lind Alliance (JLA) has collected research questions about alcohol-related liver disease, and today launches a new survey to establish which questions are most important.

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.

Professor Dame Sally C. Davies FRS FMedSci, Chief Medical Officer and Chief Scientific Adviser at the Department of Health, said:

"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 listen to the views of 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."

In June last year, the JLA Alcohol-Related Liver Disease PSP launched an initial survey to collect questions about the diagnosis, prevention, care and treatment of alcohol-related liver disease. Over 230 patients, carers, clinicians and family members from across the UK affected by the disease submitted their questions to have their say and influence future research in the area.

Help us to prioritise these research questions by completing the survey. Participation is anonymous. We would love your feedback, if you are:

• someone at risk of, or worried about, alcohol-related liver disease
• someone with alcohol-related liver disease
• someone who has had alcohol-related liver disease
• a carer/partner/relative/friend of a person with, or who has had, alcohol-related liver disease
• a bereaved carer/partner/relative/friend of a person who had alcohol-related liver disease
• a health or social care professional
• a support worker, or
• an organisation representing the interests of people with alcohol-related liver disease

The 25-30 top questions will be taken to a workshop later in the year where they will be discussed and prioritised by patients, carers and health professionals to agree a final top 10 list. That Top 10 will be available for researchers and research funders to encourage new research focused on alcohol-related liver disease.

If you have any queries about the questions or about the survey, please email jla@southampton.ac.uk or on 02380 597830.

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