Author information
1
London School of Economics & Political Science, Houghton St, London WC2A 2AE, UK.
2
European Liver Patients' Association, Rue de la Loi 235/27 1040 Brussels, Belgium.
3
School of Medicine, University of Queensland, 288 Herston Road, Herston, QLD, 4006, Australia.
4
British Liver Trust, 6 Dean Park Crescent, Bournemouth BH1 1HL, UK.
5
Singapore General Hospital, Outram Road, 169608, Singapore.
6
Taiwan Good Liver Foundation, No. 100, Tzyou 1st Road Kaohsiung 807, Taiwan.
7
Canadian Liver Foundation, Suite 801, 3100 Steeles Avenue East Markham, ON L3R 8T3 Canada.
Abstract
AIM:
To better understand the hepatocellular carcinoma (HCC) patient journey, we conducted a patient survey across 13 countries.
METHODS:
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.
RESULTS:
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%).
CONCLUSION:
Most patients with HCC require additional accessible information. People with incurable HCC require treatments that preserve QoL.