Research Priorities for Alcohol-Related Liver Disease

JLA PSP final report (2016) full text summary PDF

For which topic were research priorities identified?

alcohol-related liver disease

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Alcohol-related liver disease accounts for the majority of UK liver disease, which is the third most common cause of premature death in the UK. It has had disproportionately little research attention or spending in the past, despite its impact on patients and their families, and there are still many questions about the diagnosis, treatment and care of the disease that remain unanswered. Traditionally, the focus of medical research is decided by funders and researchers. There is often a mismatch between what gets researched and what would actually make a real difference to the lives of patients.

What was the objective?

to find unanswered questions about the prevention, diagnosis, treatment and care of alcohol-related liver disease that are important to the people it affects

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

October 2014 - September 2016

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up PSP: establishing the PSP and getting people involved, steering group agreed on scope. Step 2: gathering questions: via survey, participants were asked: What questions, if any, do you have about the prevention of alcohol-related liver disease? What questions, if any, do you have about the diagnosis of alcohol-related liver disease? What questions, if any, do you have about the care and support of people with or affected by alcohol-related liver disease? What questions, if any, do you have about the treatment of alcohol-related liver disease? Do you have any other questions relating to alcohol-related liver disease? 238 responses. Step 3: data processing: sorting responses, 1143 individual questions about ARLD extracted, in-scope-data similar questions combined and checked against existing research evidence, resulting in 45 unanswered indicative questions. Step 4: interim ranking: survey with 45 unanswered questions, participants were asked to select the 10 most important questions, ranking of all 45 questions by frequency of choice then weighted to give equal balance by patients/carers versus healthcare professionals/others, top 25 questions then taken forward to workshop. Step 5: final prioritization: workshop: participants were asked to review the list of 25 uncertainties before the workshop, small group discussions and small group rankings, plenary discussion and plenary ranking

Which stakeholders took part?

People at risk of, or worried about alcohol-related liver disease, people with alcohol-related liver disease, now or in the past, carers or family members of someone with alcohol-related liver disease, now or in the past, bereaved carers or family members of someone with alcohol-related liver disease, healthcare professionals or support workers, including community pharmacists and GPs, organizations representing the interests of people with alcohol-related liver disease. Survey: 238 participants: 74 patients, 33 carers, 110 health professionals and 21 organizations / others. Interim ranking: 277 participants. Workshop: 5 patients, 1 senior British liver trust employee representing patients, 3 carers and 10 health professionals: nursing (n=3), gastroenterology/ hepatology (n=2), psychiatry (n=2), general practice (n=1), dietetics (n=1), pharmacy (n=1).

How were stakeholders recruited?

An initial email was sent to the health professionals and patient and carer support groups that the project team was aware of, asking them to share the survey with their contacts. The second survey was promoted widely, including to all those who had responded to the initial questionnaire.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of 19 members: patients, carers and healthcare professionals. The members met monthly and agreed on the scope and protocol of the project.