Multiple support groups exist for people suffering from general liver conditions and diseases. However, although HCC is the sixth most commonly-diagnosed cancer globally, and the second-leading cause of cancer deaths annually, there are very few organisations that focus solely on HCC patients. As a result, HCC patients may not be receiving valuable support and information about their condition. In the absence of an international voice, there is limited information about the HCC patient journey.
In order to address these issues London School of Economics (LSE) decided to develop the first global survey of people living with HCC to better understand their patient journey.
The aim of this survey was to better understand the HCC patient experience; to learn how these patients cope with life with HCC, including their hopes, concerns, and fears; and to find out how they feel about the different medical treatments they receive, particularly the effects of later stage treatment on quality of life (QoL).
The survey contained 32 closed- and open-ended questions, which gave the patients a chance to express, in their own words, their opinions about the evolution of their illness, the challenges raised by different treatment options, including side effects, impact on QoL, issues around treatment access and their feelings about their most-recently received treatment. It was made available in languages and distributed to patients across 13 countries.
Future Medicine (March 2018)
Insights into the hepatocellular carcinoma patient journey: results of the first global quality of life survey