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. We wanted to learn how people with liver cancer live with their cancer. In this study, we looked at liver cancer that is advanced and/or liver cancer that has spread to other parts of the body outside of the liver. We read articles in science journals and talked with five liver cancer doctors and 15 people with liver cancer. We talked to each person for about one hour and recorded our call. Afterwards, we wrote down what people said during the call and read it. We wanted to know how people with liver cancer felt day-to-day and how their liver cancer changed how well they could do what they wanted to do. People with liver cancer most often felt tired and weak, lost weight, had trouble sleeping, and were less hungry than they were before they got liver cancer. Because of their liver cancer, people could not move their bodies like they wanted to (like walking or playing sports), had to change what they did with friends and family, felt sad and worried, and had trouble doing day-to-day tasks, like chores and shopping. A few people also had less money, had to go on sick leave, or had to retire earlier than they would have liked. This study helped us to better understand what it’s like for people to live with liver cancer. It may help people working in health care to better understand how people with liver cancer feel.