Insights Into the Hepatocellular Carcinoma Patient Journey: Results of the First Global Quality of Life Survey

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.

Keywords::

• carcinoma
• global survey
• hepatocellular
• patient journey
• patient survey
• quality of life
• SIRT
• sorafenib
• TACE
• treatment effects

Acknowledgements

The authors would like to thank all patients who participated in this survey and strategic sight for assistance with survey development and data collection.

Financial & competing interest disclosure

J Gill reports grants and personal fees from Sirtex Medical Limited, UK, during the conduct of the study; grants from Pfizer Inc., outside the submitted work. EM Yoshida reports grants from AbbVie Inc, during the conduct of the study; grants and personal fees from Gilead Sciences, grants and personal fees from Merck Inc, grants from Janssen Inc, grants from Springbank Inc, grants from Intercept Inc, grants from Genfit, personal fees from Celgene Canada Inc, outside the submitted work. This study was funded by an unrestricted educational grant from Sirtex Medical Limited, UK. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Additional information

Funding

J Gill reports grants and personal fees from Sirtex Medical Limited, UK, during the conduct of the study; grants from Pfizer Inc., outside the submitted work. EM Yoshida reports grants from AbbVie Inc, during the conduct of the study; grants and personal fees from Gilead Sciences, grants and personal fees from Merck Inc, grants from Janssen Inc, grants from Springbank Inc, grants from Intercept Inc, grants from Genfit, personal fees from Celgene Canada Inc, outside the submitted work. This study was funded by an unrestricted educational grant from Sirtex Medical Limited, UK. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.