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.

Public Health Relevance

Symptoms and other aspects of health-related quality of life are important outcomes in the evaluation of patients with hepatocellular carcinoma. The goal of the present proposal is to develop a technological solution for integrating patient-reported outcomes (PRO) with more traditional, clinical data found in patients'electronic health records. Such a solution may allow for more meaningful use of PRO in clinical decision making for this population

National Institute of Health (NIH)
Small Research Grants (R03)
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Special Emphasis Panel (ZCA1)
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Mitchell, Sandra A
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Northwestern University at Chicago
Public Health & Prev Medicine
Schools of Medicine
United States
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Butt, Zeeshan; Lai, Jin-Shei; Beaumont, Jennifer L et al. (2014) Psychometric properties of a brief, clinically relevant measure of pain in patients with hepatocellular carcinoma. Qual Life Res 23:2447-55