Li Leung, Yeo Winnie
Leung Li, Winnie Yeo, Department of Clinical Oncology, Prince of Wales Hospital, Faculty of Medicine, the Chinese University of Hong Kong, Hong Kong, China.
World J Hepatol. 2017 Jul 18;9(20):867-883. doi: 10.4254/wjh.v9.i20.867.
Health related quality of life (HRQOL) is increasingly recognized as an important clinical parameter and research endpoint in patients with hepatocellular carcinoma (HCC). HRQOL in HCC patients is multifaceted and affected by medical factor which encompasses HCC and its complications, oncological and palliative treatment for HCC, underlying liver disease, as well as the psychological, social or spiritual reaction to the disease. Many patients presented late with advanced disease and limited survival, plagued with multiple symptoms, rendering QOL a very important aspect in their general well being. Various instruments have been developed and validated to measure and report HRQOL in HCC patients, these included general HRQOL instruments, ., Short form (SF)-36, SF-12, EuroQoL-5D, World Health Organization Quality of Life Assessment 100 (WHOQOL-100), World Health Organization Quality of Life Assessment abbreviated version; general cancer HRQOL instruments, ., the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30, Functional Assessment of Cancer Therapy (FACT)-General, Spitzer Quality of Life Index; and liver-cancer specific HRQOL instruments, ., EORTC QLQ-HCC18, FACT-Hepatobiliary (FACT-Hep), FACT-Hep Symptom Index, Trial Outcome Index. Important utilization of HRQOL in HCC patients included description of symptomatology and HRQOL of patients, treatment endpoint in clinical trial, prognostication of survival, benchmarking of palliative care service and health care valuation. In this review, difficulties regarding the use of HRQOL data in research and clinical practice, including choosing a suitable instrument, problems of missing data, data interpretation, analysis and presentation are examined. Potential solutions are also discussed.
健康相关生活质量（HRQOL）日益被视为肝细胞癌（HCC）患者的一项重要临床参数和研究终点。HCC患者的HRQOL是多方面的，受医学因素影响，这些因素包括HCC及其并发症、HCC的肿瘤学和姑息治疗、潜在的肝脏疾病，以及对该疾病的心理、社会或精神反应。许多患者就诊时已处于疾病晚期且生存期限有限，伴有多种症状，这使得生活质量成为他们总体健康状况中非常重要的一个方面。已经开发并验证了各种工具来测量和报告HCC患者的HRQOL，这些工具包括一般HRQOL工具，如简表（SF）-36、SF-12、欧洲五维健康量表（EuroQoL-5D）、世界卫生组织生活质量评估100项量表（WHOQOL-100）、世界卫生组织生活质量评估简表；一般癌症HRQOL工具，如欧洲癌症研究与治疗组织（EORTC）QLQ-C30、癌症治疗功能评估量表（FACT）-通用版、斯皮策生活质量指数；以及肝癌特异性HRQOL工具，如EORTC QLQ-HCC18、FACT-肝胆量表（FACT-Hep）、FACT-肝胆症状指数、试验结果指数。HRQOL在HCC患者中的重要用途包括描述患者的症状和HRQOL、临床试验中的治疗终点、生存预后、姑息治疗服务的基准以及医疗保健评估。在本综述中，研究了在研究和临床实践中使用HRQOL数据时遇到的困难，包括选择合适的工具、缺失数据问题、数据解释、分析和呈现。还讨论了潜在的解决方案。
