London School of Economics & Political Science, Houghton St, London WC2A 2AE, UK.
European Liver Patients' Association, Rue de la Loi 235/27 1040 Brussels, Belgium.
School of Medicine, University of Queensland, 288 Herston Road, Herston, QLD, 4006, Australia.
British Liver Trust, 6 Dean Park Crescent, Bournemouth BH1 1HL, UK.
Singapore General Hospital, Outram Road, 169608, Singapore.
Taiwan Good Liver Foundation, No. 100, Tzyou 1st Road Kaohsiung 807, Taiwan.
Canadian Liver Foundation, Suite 801, 3100 Steeles Avenue East Markham, ON L3R 8T3 Canada.
To better understand the hepatocellular carcinoma (HCC) patient journey, we conducted a patient survey across 13 countries.
The survey included closed- and open-ended questions developed using an iterative process to gather information on demographics, diagnosis and treatment. Patients self-selected or were directed to the online survey by their doctor.
A total of 256 patients completed the survey. More than two-thirds (68%) felt they did not receive enough information about HCC at diagnosis. Treatments included oral anticancer therapy, transarterial chemoembolization (TACE), and selective internal radiation therapy (SIRT). A total of 81% receiving sorafenib, 45% receiving SIRT and 32% receiving TACE reported impaired quality-of-life (QoL). A total of 42, 19 and 0% of patients using sorafenib rated their current QoL as 'poor', 'good' and 'excellent', respectively; compared with SIRT (22, 33 and 6%) or TACE (11, 37 and 13%).
Most patients with HCC require additional accessible information. People with incurable HCC require treatments that preserve QoL.