Qualitative research to understand the patient experience with advanced and/or metastatic hepatocellular carcinoma

The present study aimed to explore the patient experience in advanced and/or metastatic hepatocellular carcinoma (HCC).

A multi-phase research design was followed that included a targeted literature review (TLR), interviews with clinicians, and interviews with patients. Patient interviews were analyzed using an iterative, thematic analysis approach. An assessment of the conceptual saturation of all spontaneously patient-reported signs and symptoms was conducted.

Ten patient-centric qualitative studies were identified in the TLR. Five United States (US) clinicians and 15 US patients participated in semi-structured interviews, conducted via video conferencing, lasting approximately 60 minutes each. The five most commonly reported symptoms were fatigue, weight loss, weakness, reduction in appetite, and sleep disturbance. Furthermore, HCC impacted all aspects of patients' lives, including physical functioning, social and family functioning, emotional functioning, physical activities, and activities of daily living. The concepts were mostly similar across the different data sources. A patient-centric conceptual model was developed based on the TLR and patient interviews.

The study provides an in-depth description of signs/symptoms and impacts in advanced and/or metastatic HCC that can support the identification of suitable patient-reported outcome measures. Separate investigation is needed to distinguish between disease impacts and treatment impacts.