Insights into the hepatocellular carcinoma patient journey: results of the first global quality of life survey

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.