Background: Alcohol use is the third leading risk factor of death and disability in the UK and costs the NHS £3.5 billion per year. Despite the high prevalence and healthcare burden of Alcohol-related Liver Disease (ArLD), there has been minimal research addressing prevention, morbidity and mortality. Reasons for this include stigma and lack of interest from public, charitable and commercial funding bodies. The objectives of this project were to identify and develop interdisciplinary partnerships, to explore stigma in ArLD, to develop a representative Patient and Public Involvement and Engagement (PPIE) group, to build research capacity, and to develop interdisciplinary research proposals targeting key research priorities.
Methods: ArLD networks were identified by members of the Project Steering Group. Health Care Professionals (HCPs) from different backgrounds were invited to join the ARMS-Hub. PPIE representatives were invited through charities and support groups. Research areas were identified, discussed, prioritised and ranked. Research questions were refined during an in-person symposium. A mentorship programme was created to encourage and facilitate networking and knowledge exchange for early career researchers.
Results: We established the ARMS-Hub with 31 HCPs and 40 PPIE members. There were five stakeholder meetings, which included PPIE representation. Three virtual and three in-person PPIE meetings took place. Topics relevant to stigma in ARLD identified during the meetings were education and awareness, language, and access. Priorities identified were the disconnect between mental health and liver services, education around the wider harms of alcohol, and education of HCPs regarding stigma. We established a mentorship network that regularly meets to support development of new research ideas.
Conclusions: Stigma is central to lack of research engagement from professionals and PPIE. The main priority identified relates to the disconnect between mental health and liver services. This collaborative study has allowed development of a research agenda to address this priority.
Keywords: ArLD; PPIE; alcohol-related liver disease; liver disease; mental health; people with lived experience; stigma.
Background: Alcohol-related liver disease (ArLD) is a big problem and the third most common cause of death and disability in the UK. Alcohol use costs the NHS billions each year. However, partly due to the stigma associated with ArLD, research into preventing, treating, and understanding it has been limited.
Aim: We aimed to create a network of ArLD experts and people with lived experience and their carers (ARMS-Hub). By working together, we aimed to improve research on ArLD through understanding what research is needed and how best to carry it out.
Methods: We identified existing ArLD networks and invited health workers (doctors, nurses, allied health professionals), scientists, academics, people from the voluntary/ charity sector, and people with lived experience and their carers to join our hub. We talked about stigma and priorities for ArLD research in a series of online and in-person meetings. A mentorship network was also created to help share information and develop research capacity.
Results: Thirty-one health workers and 40 people with lived experience or their carers attended 12 ARMS-Hub meetings. Discussions focused on education of the public and health workers on the harms of alcohol, the use of stigmatising language and complex medical terms, access to liver and mental health services and the culture around alcohol use. The areas considered most important to the group for future research were: Integration of mental health and liver services;education on effects of alcohol use;training of health workers on alcohol stigma.
Dissemination: In the final meeting, we worked on a proposal for a research project to improve the recognition and treatment of mental health problems in people attending hospital liver clinics.
Copyright: © 2024 Dhanda A et al.