Understanding the patient experience in hepatocellular carcinoma: a qualitative patient interview study
N Patel, J Maher, X Lie, C Gwaltney, A Barzi… - Quality of Life …, 2022 - Springer
N Patel, J Maher, X Lie, C Gwaltney, A Barzi, M Karwal, T Macarulla, HC Sun, J Trojan…
Quality of Life Research, 2022•SpringerPurpose 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 …
(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 …
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.
Springer
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