The British Liver Trust has joined a special partnership of similar organisations across Europe, North America and Asia to ask the hundreds of men and women with primary liver cancer, also called Hepatocellular Carcinoma (HCC), to share their experiences.
By responding to this first ever international survey of people living with HCC, patients who take part will be helping to provide information that will inform the improvement of care of everyone affected by liver cancer in the future.
The anonymous survey is available online at https://www.hcc-voices.com/uk
Patients can access it until December 31, 2016 confident that their privacy will be assured. All those who do will receive a personal copy of the report, which will enable them to compare their observations with those of others who participated.
Primary Liver cancer mainly occurs after the liver has become scarred through damage over a long period of time. This can be due to lifestyle choices such as excess alcohol, viral infections like hepatitis B and C, non-alcohol related fatty liver disease (NAFLD) which is becoming significantly more prevalent, and as a result of genetic and auto-immune conditions.
Speaking about our involvement in the international survey, Trust CEO Andrew Langford said:
“Liver cancer (HCC) remains one of the most feared cancers - this survey will provide invaluable insight into the wide range of needs of those living with HCC and evidence to request improvements in the holistic care that is so desperately needed to improve the life of those affected.“
In addition to the British Liver Trust, other liver cancer groups from around the world are participating in the survey, including the American Liver Foundation, Blue Faery, the Canadian Liver Foundation, the European Liver Patients' Association, Taiwan Liver Cancer Association and a number of liver cancer treatment units in major international medical centres.
The survey results will be available in 2017 in the form of a report from the London School of Economics and the participating liver cancer groups. The survey findings will be available to liver research organisations, scientific journals and the media.