The British Liver Trust worked with researchers on this study that looked at health inequalities in patients with hepatocellular carcinoma (HCC).

This blog is based on a lay summary that was created with people living with liver disease who were part of the research team.

Hepatocellular carcinoma (HCC) is the most common type of liver cancer. It is usually caused by underlying liver damage known as cirrhosis. In the UK, more than 3,400 people are diagnosed with HCC each year. Due to increasing levels of cirrhosis in the general population, HCC is one of the fastest growing causes of cancer death.

There are no symptoms in the early stages of HCC when it can often be cured. So people with cirrhosis are offered regular checks for liver cancer twice per year. This is known as HCC surveillance. But despite this, HCC is too often diagnosed late.

In the UK, only 1 in 4 people with HCC get treatment that could cure the condition. Less than 1 in 5 are still alive 5 years after being diagnosed.

But it does not have to be like this. Japan is considered a world leader in liver cancer care. 3 in 5 people with HCC receive potentially curative treatment, and half of them are still alive after 5 years.

In the UK there seems to be unfair and avoidable differences in care. These differences are known as health inequalities. They can affect things like access to tests and treatment. And even how long people are likely to live. But so far no one has brought together the research on this problem for HCC in the UK.

Aims of the research

We need a clearer understanding of how health inequalities affect people with HCC in the UK. This will help to shape future research and improve patient care. The long-term goal is to make outcomes from HCC more fair across the population.

What the researchers did

The researchers did a type of study called a “scoping review”. This brings together all the research that has already been done on the topic. It meant they could summarise what we know about how health inequalities affect HCC care and outcomes. They could then work out what information is missing, and where more research is needed.

The team searched online libraries of scientific articles. They carefully selected all relevant articles and made sure they had been checked by the scientific community.

Each of these was analysed by the research team.  They looked at the quality of research and its problems or limitations. They then reported the type of research that had been done and its main findings.

What the research found

The combination of poor surveillance testing, late diagnosis, and limited access to treatment that could cure HCC seems to be making outcomes worse in the UK.

Health inequalities mean that disadvantaged groups of people are less likely to have regular testing. This means they are more likely to be diagnosed late. Which reduces their chance of surviving.  

The researchers found that outcomes in the UK were worse for:

• older adults
• men
• people with Asian or Black Caribbean heritage
• people living in deprived areas
• people with alcohol-related liver disease

But more research is needed to fully understand the differences in surveillance quality. And we need to know more about differences in the journey from diagnosis to treatment across different groups.

The study also found a need for another important type of research. The perspectives and experiences of patients have not yet been explored. But this can have a big impact on improving care pathways.

The study found that there is promising work going on, but more research and development is needed to look at:

• new ways to find people with cirrhosis
• making sure more of the people who need surveillance can get it
• making care work better for individuals based on their risk

A combination of more research and better organisation and leadership at the national level are needed to improve care and outcomes for people with HCC in the UK.

Patients in the research team

As this study showed, it is vital that people with liver conditions are involved in research. The British Liver Trust works alongside researchers to ensure that patient voices play an important role in all stages of research.

The British Liver Trust asked Steve Rodrigues, a patient with alcohol related liver disease to be involved in this study:

“I wanted to be involved on this project so I could continue to use my own experience and journey of alcohol related liver disease as a resource to help others.

I learnt so much and actually realised just how much I DIDN’T know about liver disease.

I was involved in completing the Plain English Summary of the paper and formulating patient questionnaires. I was also proud to present to around 80 people at the dissemination conference.

In my role as Public Governance Advisor for the project I worked alongside a wonderful man who became a dear friend. Very sadly he passed away very recently, and my work is dedicated to him.

If you can get the right combination of someone with lived experience who is willing to share it, working alongside a team of health professionals who are all willing to work and engage with each other, then for me there is no more positive or powerful tool for good This project has proved that beyond any doubt whatsoever and I’m proud to be part of its legacy.”

The REVISE-HCC project is led by The University of Manchester and Manchester University NHS Foundation Trust and is supported by Roche Diagnostics, Imperial College London, Vocal and Unity Insights. The project is funded by the NHS Cancer Programme, with support from the Small Business Research Initiative (SBRI) Healthcare Programme.

You can read the full research paper here.