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Open Access 01-02-2022 | Hepatocellular Carcinoma

Understanding the patient experience in hepatocellular carcinoma: a qualitative patient interview study

Authors: Nikunj Patel, Joshua Maher, Xandra Lie, Chad Gwaltney, Afsaneh Barzi, Mark Karwal, Teresa Macarulla, Hui-Chuan Sun, Jörg Trojan, Oren Meyers, Christina Workman, Shethah Morgan, Alejandra Negro, Gordon Cohen

Published in: Quality of Life Research | Issue 2/2022

Abstract

Purpose

This study aimed to elucidate the patient experience of hepatocellular carcinoma (HCC) to guide patient-centered outcome measurement in drug development.

Methods

Patients with HCC participated in qualitative interviews to elicit disease-related signs/symptoms and impacts, using discussion guides developed from literature searches and discussions with oncologists. Interview participants rated the disturbance of their experiences (0–10 scale). A conceptual model was developed and mapped against patient-reported outcome (PRO) instruments identified from database reviews.

Results

Interviews were conducted with 25 individuals with HCC (68% were men; median age: 63 years; 12% Barcelona clinic liver cancer (BCLC) stage A; 32% stage B; and 56% stage C) in the USA. Fifty-one HCC-related concepts were identified from the interviews and were grouped into eight sign/symptom categories (eating behavior/weight changes; extremities [arms, legs]; fatigue and strength; gastrointestinal; pain; sensory; skin; other) and four impact categories (emotional; physical; cognitive function; other) for the conceptual model. The most prevalent and disturbing experiences across the disease stages were fatigue/lack of energy and emotional impacts such as frustration, fear, and depression. Abdominal pain and skin-related issues were particularly common and disturbing in individuals with HCC stage C. The EORTC QLQ-C30 and HCC18 were identified as commonly used PRO instruments in HCC studies and captured the relevant signs/symptoms associated with the patient experience.

Conclusion

Patients with HCC reported a range of signs/symptoms and impacts that negatively affect daily functioning and quality of life. Including PRO measures in HCC clinical trials can provide meaningful patient perspectives during drug development.

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Title: Understanding the patient experience in hepatocellular carcinoma: a qualitative patient interview study
Authors: Nikunj Patel
Joshua Maher
Xandra Lie
Chad Gwaltney
Afsaneh Barzi
Mark Karwal
Teresa Macarulla
Hui-Chuan Sun
Jörg Trojan
Oren Meyers
Christina Workman
Shethah Morgan
Alejandra Negro
Gordon Cohen
Publication date: 01-02-2022
Publisher: Springer International Publishing
Keywords: Hepatocellular Carcinoma
Hepatocellular Carcinoma
Published in: Quality of Life Research / Issue 2/2022
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-021-02903-4

At a glance: The STEP trials

Springer Medicine

Understanding the patient experience in hepatocellular carcinoma: a qualitative patient interview study

Abstract

Purpose

Methods

Results

Conclusion

At a glance: The STEP trials

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusion

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