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.

本研究旨在探索晚期和/或转移性肝细胞癌（hepatocellular carcinoma, HCC）患者的患病体验。本研究采用多阶段研究设计，涵盖靶向文献综述（targeted literature review, TLR）、临床医师访谈及患者访谈。患者访谈采用迭代式主题分析法进行分析。针对所有患者自发报告的体征与症状的概念饱和度开展了评估。在靶向文献综述中共纳入10项以患者为中心的定性研究。共有5名美国临床医师与15名美国患者参与了通过视频会议开展的半结构化访谈，每例访谈时长约60分钟。
研究中报告频次最高的5项症状为疲劳、体重减轻、乏力、食欲减退及睡眠障碍。此外，肝细胞癌对患者生活的各个方面均造成影响，包括躯体功能、社会与家庭功能、情绪功能、体力活动及日常生活活动能力。不同数据源所得出的概念框架大体一致。基于靶向文献综述与患者访谈结果，本研究构建了以患者为中心的概念模型。本研究深入阐述了晚期和/或转移性肝细胞癌患者的体征、症状及疾病影响，可为适宜的患者报告结局指标（patient-reported outcome measures）的筛选提供支撑。未来仍需开展独立研究，以区分疾病本身的影响与治疗相关影响。
我们旨在了解肝癌患者的真实患病日常。本研究聚焦于晚期肝癌，或已发生肝外转移的肝癌人群。我们检索了学术期刊文献，并访谈了5名肝癌专科医师与15名肝癌患者。每例访谈时长约1小时，通过视频会议开展并进行录音。访谈结束后，我们转录所有访谈内容并逐字研读，以了解肝癌患者的日常感受，以及肝癌如何改变他们完成自身意愿事项的能力。肝癌患者最常出现的症状包括疲乏、乏力、体重下降、睡眠障碍及食欲较患病前减退。受肝癌影响，患者无法按自身意愿开展躯体活动（如步行或运动），不得不调整与亲友的相处模式，陷入悲伤与焦虑情绪，且难以完成家务、购物等日常事务。部分患者还面临经济状况恶化、被迫休病假或提前退休的困境。本研究有助于我们更深入地理解肝癌患者的真实患病体验，或可为医疗从业者更好地了解肝癌患者的身心状态提供参考。