Improving Longitudinal Quality of Life Assessment in Hepatocellular Carcinoma

改善肝细胞癌的纵向生活质量评估

• 批准号: 8568295
• 负责人: Zeeshan Ahmad Butt
• 金额: $ 7.73万
• 依托单位: NORTHWESTERN UNIVERSITY AT CHICAGO
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-07-01 至 2015-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8568295
• 关键词: Ablation; Accounting; Address; Affect; Algorithms; BAY 54-9085; Cancer Etiology; Cessation of life; Characteristics; Chemoembolization; Climacteric; Clinic; Clinical; Clinical Data; Clinical Research; Comorbidity; Consent; Data; Data Collection; Data Set; Decision Making; Decision Modeling; Development; Devices; Diagnostic Neoplasm Staging; Disease; Electronic Health Record; Enrollment; Ethanol; Evaluation; Excision; Eye; Familiarity; Future; Goals; Head; Health; Hepatic; Incidence; Individual; Intervention Trial; Literature; Liver Cirrhosis; Liver diseases; Longitudinal Studies; Malignant Neoplasms; Mediating; Medical; Methods; Modeling; Morbidity - disease rate; Newly Diagnosed; Online Systems; Operative Surgical Procedures; Outcome; Patient Outcomes Assessments; Patients; Performance Status; Pilot Projects; Population; Primary carcinoma of the liver cells; Quality of life; Quality-of-Life Assessment; Radiofrequency Interstitial Ablation; Relative (related person); Reporting; Research; Sampling; Solutions; Staging; Surveys; Symptoms; Tablets; Technology; Testing; Time; Transplantation; United States; Universities; Withdrawal; base; chemotherapy; chronic liver disease; clinical care; clinical decision-making; cohort; comparative; cost; follow-up; health information technology; health related quality of life; improved; liver transplantation; longitudinal course; mortality; novel; public health relevance; treatment strategy; trend; tumor; willingness

DESCRIPTION (provided by applicant): Hepatocellular carcinoma (HCC) is a primary hepatic malignancy that affects individuals with chronic liver disease. The incidence of HCC has been increasing in recent years; it is currently the third leading cause of cancer death worldwide and the ninth leading cause of cancer death in the United States. Although there are a variety of treatment options available for patients with HCC, no comprehensive treatment model exists. Quality of life (QOL) outcomes are frequently omitted in HCC research but would provide useful information for the creation of any treatment decision model. Specifically, there is a need for additional data on the longitudinal course of QOL among patients with HCC, particularly those undergoing therapy. To that end, the overarching goals of this pilot study are: (1) to develop, test, and assess a web-based, tablet PC data collection application that will allow seamless integration of QOL data with the electronic health record, and (2) to conduct a longitudinal study of health-related QOL in a cohort of patients with newly diagnosed HCC. Such data will provide needed preliminary data to inform larger observational or intervention trials and will provide initial estimates of the impact of cancer stage, progression, performance status, underlying liver disease, and demographic variables on relevant QOL domains. Our goal is to use these pilot data, which would be one of the largest datasets of longitudinal HCC QOL to date, to inform a multi-center study, with an eye toward development of a data-driven treatment decision model.

描述（由申请人提供）：肝细胞癌（HCC）是影响患有慢性肝病患者的主要肝恶性肿瘤。近年来，HCC的发病率一直在增加。目前，它是全球癌症死亡的第三大主要原因，也是美国癌症死亡的第九主要原因。尽管HCC患者有多种治疗选择，但尚无综合治疗模型。 HCC研究经常省略生活质量（QOL）结果，但将为创建任何治疗决策模型提供有用的信息。具体而言，在HCC患者（尤其是接受治疗的患者）中，需要有关QOL纵向训练的其他数据。为此，这项试验研究的总体目标是：（1）开发，测试和评估基于网络的平板PC数据收集应用程序，该应用程序将允许将QOL数据与电子健康记录无缝集成，以及（2）在具有新诊断的HCC的患者队列中进行健康相关QOL的纵向研究。此类数据将提供所需的初步数据，以告知更大的观察或干预试验，并将提供对癌症阶段，进展，性能状况，潜在肝病以及人口统计学变量对相关QOL域的影响的初步估计。我们的目标是使用这些试验数据，这将是迄今为止纵向HCC QOL的最大数据集之一，以告知一项多中心研究，并着眼于开发数据驱动的治疗决策模型。