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Understanding the patient experience in hepatocellular carcinoma: a qualitative patient interview study
Journal article   Open access   Peer reviewed

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

Nikunj Patel, Joshua Maher, Xandra Lie, Chad Gwaltney, Afsaneh Barzi, Mark Karwal, Teresa Macarulla, Hui-Chuan Sun, Jörg Trojan, Oren Meyers, …
Quality of life research, Vol.31(2), pp.473-485
02/2022
DOI: 10.1007/s11136-021-02903-4
PMCID: PMC8847294
PMID: 34115280
url
https://doi.org/10.1007/s11136-021-02903-4View
Published (Version of record) Open Access

Abstract

This study aimed to elucidate the patient experience of hepatocellular carcinoma (HCC) to guide patient-centered outcome measurement in drug development. 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. 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. 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.
 Carcinoma, Hepatocellular Humans Liver Neoplasms Male Middle Aged Patient Reported Outcome Measures Qualitative Research Quality of Life - psychology

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