Help us prioritise research into alcohol-related liver disease In June 2015 we launched a survey to collect questions about the diagnosis, prevention, care and treatment of alcohol-related liver disease from people affected, their families and the people who care for and treat them. The survey generated many questions. We are now asking you to select the 10 that you think are the most important. Please take part if you are: A person at risk of, or worried about, alcohol-related liver disease A person with alcohol-related liver disease A person who has had alcohol-related liver disease The carer/partner/relative/friend of a person with, or who has had, alcohol-related liver disease The bereaved carer/partner/relative/friend of a person who had alcohol-related liver disease A health or social care professional A support worker An organisation representing the interests of people with alcohol-related liver disease How to take part in the survey: This survey contains 45 questions about the diagnosis, prevention, care and treatment of people with alcohol-related liver disease. Based on your personal or professional experience, we would like you to choose 10 questions that you think are the most important. The last section asks for some brief information about you to help us ensure that we get responses from a wide range of patients, carers and professionals. The survey is completely anonymous. You will not be identified in the results in any way. What happens next? This survey will close on 14 August 2016. The 25 questions with the most votes will be taken to a workshop later in the year to create a final shortlist. That final shortlist will be promoted to researchers and research funders, to highlight the questions that alcohol-related liver disease research needs to answer. If you have any queries about the questions or about completion of the questionnaire, please contact the JLA at jla@southampton.ac.uk or on 02380 597830 Support for or information about all liver disease can be obtained from www.britishlivertrust.org.uk 1
* Please read through all 45 questions below and then select 10 questions that you personally think are the most important for research to answer. 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? By this we mean: What are the best ways of getting across to people with alcohol-related liver disease exactly what the condition means, and how important it is to stop drinking? (01) 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)? By this we mean: What are the best ways of educating and informing different ages and groups in society about the dangers of drinking too much and the warning signs of alcohol-related liver disease? (02) 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)? By this we mean: How is the risk of getting alcoholrelated liver disease affected by how much and how often you drink alcohol? (03) To what degree is established liver disease reversible? By this we mean: Is it possible to reverse alcohol-related liver disease once it has been diagnosed? (04) What are the most effective ways to help people with alcohol-related liver disease stop drinking? (05) What are the obstacles for individuals to modification of their alcohol consumption? By this we mean: Why do people find it difficult to reduce or stop drinking? (06) Are there any effective treatments for alcohol-related liver disease apart from abstinence from alcohol? By this we mean: Are there any other effective treatments for alcohol-related liver disease apart from stopping drinking totally? (07) Do specific interventions involving family members/social support improve maintenance of alcohol abstinence in individuals with alcohol-related liver disease? By this we mean: Does support from family and friends help people with alcohol-related liver disease to control or stop their drinking? (08) What are the most effective strategies to reduce the risk of alcohol-related liver disease in heavy drinkers? By this we mean: What are the best ways of reducing the risk of heavy drinkers developing alcohol-related liver disease? (09) Does the type of alcohol (e.g. wine, beer, spirits etc.) affect the risk, or progression, of alcohol-related liver disease? (10) What is the patient's experience of alcohol-related liver disease? By this we mean: What do patients need to help them cope with the physical and emotional effects of alcohol-related liver disease? (11) What are the most effective interventions delivered in combined clinics in the setting of secondary care for alcoholrelated liver disease? By this we mean: What are the best combined treatments that hospitals and clinics can offer patients with alcohol-related liver disease, including psychological support? (12) Is there a difference between the outcome of alcohol-related liver disease patients treated by specialised liver disease units/hepatologists versus general gastro-enterologists? By this we mean: Is there a difference in the result of alcohol-related liver disease patients treated by specialist liver disease units/consultants (hepatologists) and those treated by more general units/consultants (e.g. gastroenterologists)? (13) What is the most effective model of community-based care for patients with alcohol-related liver disease? By this we mean: Outside of hospitals/clinics, what and where is the best support for patients with alcohol-related liver disease? (14) Does the stigma associated with alcohol misuse affect the willingness of people with alcohol-related liver disease to ask for help? (15) 2
Does the media portray excessive drinking in an inappropriately positive way and does this affect behaviour? By this we mean: Does the media portray drinking as glamorous and fun, and does this influence behaviour? (16) Do attitudes to perceived 'self-induced illness' amongst healthcare professionals affect treatment, care provision and compassion for individuals with alcohol-related liver disease? By this we mean: Do doctors and nurses give a lower standard of treatment, care and compassion to people with alcohol-related liver disease because they think they have brought it on themselves? (17) What is the impact on drinking behaviour of the ready availability of alcohol in social enviroments, at home and elsewhere? By this we mean: How does the ready availability of alcohol at home and elsewhere affect people's drinking behaviour? (18) Why is alcohol-related liver disease more prevalent in low socioeconomic groups? By this we mean: Why is alcoholrelated liver disease more often found among the less well-off members of society? (19) What role do dietary factors have in susceptibility and prevention to alcohol-related liver disease? By this we mean: Does diet affect whether or not you get alcohol-related liver disease? (20) What dietary recommendations or supplements (including herbal and vitamins) are beneficial in patients at risk of or with established alcohol-related liver disease? By this we mean: What diet or supplements (including herbal and vitamins) help patients who are at risk of, or have already been diagnosed with, alcohol-related liver disease? (21) What lifestyle interventions improve outcomes in alcohol-related liver disease? By this we mean: What lifestyle changes improve the health of patients with alcohol-related liver disease? (22) What interventions best aid patients with alcohol-related liver disease maintain and manage employment? By this we mean: What support best helps alcohol-related liver disease patients who have a job to continue working? (23) Are there any early signs of alcohol-related liver disease? (24) What is the best screening test for alcohol-related liver disease and how should it be applied? By this we mean: What is the best way to screen/test for alcohol-related liver disease? (25) Should there be routine screening for alcohol-related liver disease? By this we mean: Should everyone be routinely tested for alcohol-related liver disease? (26) Should screening for primary liver cancer in patients with alcohol-related liver disease be routinely performed? By this we mean: Should patients with alcohol-related liver disease always be tested for liver cancer? (27) What is the best method for diagnosing alcohol-related liver disease and where is this best done? What is the best way to diagnose alcohol-related liver disease and where is this best done? (28) By this we mean: What are the needs and best methods for delivering support to care-givers both for themselves and the patient with alcohol-related liver disease? By this we mean: How can the needs of family/other carers of alcohol-related liver disease patients best be met? (29) What are the optimal ways of staging alcohol-related liver disease? By this we mean What are the best ways of measuring the severity of the alcohol-related liver disease (30) What is the relationship between alcohol-related liver disease and mental illness? By this we mean: What is the relationship between alcohol-related liver disease and mental health? (31) How should depression be managed in the context of alcohol-related liver disease? By this we mean: How should depression be managed in alcohol-related liver disease patients? (32) What effect does combining treatment of the liver disease with psychiatric support have on prognosis/mortality? By this we mean: Does psychiatric support together with the liver disease treatment get better results? (33) What medications for other conditions are the most effective and safe for use in patients with alcohol-related liver disease? By this we mean: If a patient with alcohol-related liver disease is taking medications for other illnesses, which ones are the safest and most effective to use? (34) What are the best means of diagnosing hepatic encephalopathy (HE)/what is the role of new methods of diagnosing HE? By this we mean: What are the best ways of identifying 'hepatic encephalopathy' which is when the liver disease begins to affect the brain? (35) 3
What models of involvement of palliative care services in advanced alcohol-related liver disease are most beneficial? By this we mean: What is the best care for those unfortunately nearing the end of their life due to advanced alcoholrelated liver disease? (36) What factors in a person with alcohol-related liver disease indicate a favourable outcome following liver transplantation? By this we mean: What aspects or factors in an alcohol-related liver disease patient make it likely that a liver transplant will be successful? (37) What treatments are safe and effective in treating alcohol withdrawal in patients with alcohol-related liver disease? (38) What are the appropriate quality markers for care in alcohol-related liver disease? By this we mean: What is the best way to measure how good the care is for patients with alcohol-related liver disease? (39) What are the factors that determine who gets significant/advanced alcohol-related liver disease (affect progression)? By this we mean: What factors affect who gets advanced alcohol-related liver disease and who doesn't? (40) 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? By this we mean: What effect would greater education/training of GPs and hospital doctors in alcohol-related liver disease have on the survival rate of those with the disease? (41) What interventions improve survival in severe alcohol-related hepatitis? By this we mean: What treatments or support improve survival of those with liver inflammation (hepatitis) due to alcohol? (42) What interventions improve survival in individuals with complications of advanced alcohol-related cirrhosis? By this we mean: What treatments improve survival of those with complications of advanced alcohol-related cirrhosis? (43) Which liver-assist machines can help survival to liver transplantation? By this we mean: Which liver-assist machines can help patients survive while waiting for a liver transplant? (44) What is the best way of identifying which patients with severe alcohol-related liver disease needing intensive care support will survive? (45) Some questions about you To ensure we gather responses from a wide range of people, it would be helpful to know a little more about you. Your answers will be treated in confidence and no individual will be identified when the results are presented. 4
* Please tick which one of the following best describes you (please tick only one) A person at risk of, or worried about, alcohol-related liver disease A person with alcohol-related liver disease A person who has had alcohol-related liver disease The carer/partner/relative/friend of a person with, or who has had, alcohol-related liver disease The bereaved carer/partner/relative/friend of a person who had alcohol-related liver disease A health or social care professional A support worker An organisation representing the interests of people with alcohol-related liver disease Other (please specify) * Which of the following best describes you? (please tick one box) Doctor Nurse Community Worker Allied Health Professional Hospital Pharmacist Community Pharmacist Psychiatrist Psychologist Social Worker Other (please specify) 5
* Which of the following best describes your work setting? Hospital GP Practice Community pharmacy Community Support Mental Health Setting Hospice Prison Care Other (please specify) * Are you (please tick one box) Male Female Prefer not to say * Which of the following best describes your ethnic group? (please tick one box) White Mixed / Multiple ethnic groups Asian / Asian British Black / African / Caribbean / Black British Other ethnic group Prefer not to say 6
* How old are you? (please tick one box) Under 16 16-24 25-34 35-44 45-54 55-64 65-74 75-84 85+ Prefer not to say * Where do you usually live? (please tick one box) North East England North West England Yorkshire and Humber East Midlands East of England London South East of England South West of England Scotland Wales Northern Ireland Outside of UK 7
Taking part in the final workshop about alcohol-related liver disease Later in the year we will be organising a full day workshop, bringing together people with alcohol-related liver disease, family members, carers and health professionals. Participants will have the opportunity to express their views and hear different perspectives to ultimately identify the 10 most important questions. If you would be interested in participating, please complete your details below. Your contact details will be stored separately from your survey responses so your name will not be linked to your responses. Contact details Name Address Address 2 City/Town Postal Code Email Address Thank you Thank you for taking the time to complete this survey and voting for questions important to you. For more information about the Alcohol-related Liver Disease Priority Setting Partnership please visit: http://www.psp.nihr.ac.uk/alcohol-related-liver-disease 8