Let’s follow #DryJanuary with a concerted effort to research patient priorities in alcohol-related liver disease @LindAlliance

This blog by me was first published on the National Institute for Health Research (NIHR) prior to Christmas to coincide with the publication of the James Lind Alliance Priority Setting Partnership on alcohol-related liver disease.

But yesterday’s report by Public Health Wales showing that thousands of people who die from alcohol related problems had no contact with alcohol treatment services has prompted me to publish it again here.  Here’s an ITN piece on the matter.

The report goes onto say that fear of being labelled or stigmatised is likely to be one of many barriers preventing people from accessing help. This chimes with the priorities for research as identified by patients, families and health professionals involved in the PSP – see below.

Further details on the alcohol-related liver disease priority setting partnership can be found here.

Calling time on alcohol-related liver disease: top ten research priorities

As we head towards Christmas I suspect many of us will enjoy a drink or two in the coming weeks; with colleagues at the office party, among friends at the local pub, or quietly at home with family.

Some reading this, however, know that for them it won’t stop there. One or two drinks will become three, four, five, and so on…..perhaps every day. It will be frightening and uncontrollable. The costs – in every sense of the word – of this sort of excessive drinking, on themselves, those around them and our health and social care system will be massive.

Alcohol-related liver disease (ALRD) is one possible consequence of alcohol misuse for which the impact is now well documented. It has become the most common type of alcohol-related death in England in recent years accounting for almost two-thirds of all alcohol related deaths in 2011 with most deaths occurring in men and women in their 50s.  Twice as many people now die from liver disease as in 1991, and liver disease is the fifth biggest killer in England and Wales after heart disease, cancer, stroke and respiratory disease.

According to a Nuffield Trust study published in 2015, in the two years before diagnosis, people with ARLD had 1.5 times more outpatient activity, 1.5 times more elective admissions, 6.5 times more A&E attendances and 7.8 times more emergency admissions, compared with the general population.

Staggering these figures may be, the more important point is that there are opportunities in this time period – if not before – to identify, treat and prevent alcohol related health problems before they get out of control.

That’s also the message I take from the James Lind Alliance Alcohol-Related Liver Disease Priority Setting Partnership (PSP) funded by the NIHR and British Society of Gastroenterology (BSG) which brought together patients, carers and health professionals to identify the top ten research priorities for alcohol-related liver disease (see below).

Yes, they want researchers to look at effective ways to help people with alcohol related disease stop drinking (#1). But they also want researchers to identify the best ways of providing information (#2), find out if stigma gets in the way of treatment and care (#5 and #7) and discover new models of caring for people in the community (#3). Also, with its mention of depression (#9), a clear signal that people with ARLD will often have other complicating health conditions as well.

  1. What are the most effective ways to help people with alcohol-related liver disease stop drinking?
  2. 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)?
  3. What is the most effective model of community-based care for patients with alcohol-related liver disease?
  4. What is the patient’s experience of alcohol-related liver disease?
  5. Do attitudes to perceived ‘self-induced illness’ amongst healthcare professionals affect treatment, care provision and compassion for individuals with alcohol-related liver disease?
  6. What are the most effective strategies to reduce the risk of alcohol-related liver disease in heavy drinkers?
  7. Does the stigma associated with alcohol misuse affect the willingness of people with alcohol-related liver disease to ask for help?
  8. What interventions improve survival in individuals with complications of advanced alcohol-related cirrhosis?
  9. How should depression be managed in the context of alcohol-related liver disease?
  10. What models of involvement of palliative care services in advanced alcohol-related liver disease are most beneficial?

In many senses this list of priorities echoes the themes that have emerged in the 40 plus PSPs that have been conducted into other conditions – the desire for research to be conducted not just on new ‘treatments’ but also into ‘care,’ ‘prevention’ and better ways to provide services.

Born out of experience is the unified voice of those struggling with this issue in their home, their community and local hospital.  It should be heeded as such by research funders and researchers and I hope that the priorities are followed-through in the coming months and years, not just by the NIHR, but by other charity, public and private sector funders as well.

One final thought. When I was thinking about this blog I noticed that Public Health England had produced a new report on the devastating impact of alcohol with a number of recommendations including support for minimum alcohol pricing.  Who knows whether such a thing will happen or not?  But if it does, what better purpose to put the revenues raised, than to fund research into the things that matter most to those affected by alcohol-related liver disease.

 

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