Hepatocellular carcinoma, or HCC, is the most common type of liver cancer and the fastest rising cause of cancer deaths in the UK.
Most people who develop HCC have a pre-existing liver condition, such as cirrhosis or hepatitis B. Those at risk should have regular surveillance tests to look for early signs of the cancer. Surveillance checks should happen every sixth months. They involve an ultrasound scan and often a blood test. But currently fewer than half of those who should have surveillance tests actually do.
Diagnosing HCC early makes a big difference to survival rates and patient outcomes. But currently only about 1 in 5 cases of HCC are found at an early stage.
Vanessa Hebditch, Director of Communications and Policy, said,
The British Liver Trust is delighted to have played a role in the development of this new guidance. Liver cancer is the fastest rising cause of cancer death in the UK but with earlier diagnosis many of these deaths can be prevented. Having clear minimum standards for liver cancer surveillance for patients is a critical step to support earlier detection of hepatocellular carcinoma. We now need to ensure that this is implemented across liver services.
New Standards
To make sure more cases of HCC are found early, The British Liver Trust has been working with NHS England and liver experts from across the country on a new minimum standard. This sets out the steps that services should take to improve access to HCC surveillance.
Who should have surveillance tests?
The new standard states that everyone with early stage cirrhosis should be offered surveillance if they are well enough to have cancer treatment and would benefit from it if HCC is found. In addition, surveillance should be offered to anyone who has hepatitis B and also cirrhosis, a family history of HCC, coinfection with hepatitis D, or significant fibrosis.
As this is just a minimum standard, some hospitals will offer surveillance to other people as well.
Data and targets
The standards set out the importance of using computer systems to keep track of patients who need surveillance. Ideally the system will be automated and able to automatically contact people who are due for a surveillance test.
The data collected should also be used to check how well the system is working. By highlighting anyone who has not been invited on time and checking on referral times for anyone found to have suspected HCC.
Each surveillance service should set targets and then regularly check their data to see how they are doing. They should also compare their results with a similar service elsewhere. This will allow services to spot potential issues and share what works well.
Supporting patients
Another area highlighted by the new standards is the need to support people who are eligible for surveillance. This includes:
- Using at least two different forms of communication to invite people for surveillance, with the second involving personal contact, such as a phone call.
- Making sure everyone who is invited has good information about surveillance. The standards suggest using the information on our website , created by The British Liver Trust and NHS England.
- Using peer support workers and pathway navigators to help contact people and provide them with information.
- Doing surveillance scans at the same time as other routine hospital appointments if possible.
- Making sure people get their results quickly and can find out what will happen next.
The standards lay out the pathway for patients, including information on who should have more tests following their surveillance results.
Blood tests
Many surveillance services combine an ultrasound scan with a blood test for Alpha-fetoprotein (AFP). The standards say that this test should be part of the surveillance unless there is a medical reason that a particular person cannot have that test.
Anyone whose ultrasound or AFP results are not normal should have a CT or MRI scan for a closer look at their liver. A specialist team should look at all their results and decide if they should be urgently referred to cancer services or if they can be booked in for another surveillance test in 6 months time.
Importance of surveillance
Liver cancer rates in the UK have increased by almost half in the last decade. Research suggests that this number will continue to go up. The new standards are an important step towards ensuring that more of those affected are identified and treated while their cancer is still in the early stages.
Find out more about the new standards on the NHS England page.