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Comparison of Health-Related Quality of Life in Patients With Neuroendocrine Tumors With Quality of Life in the General US Population

Beaumont, Jennifer L. MS*; Cella, David PhD*; Phan, Alexandria T. MD; Choi, Seung PhD*; Liu, Zhimei PhD; Yao, James C. MD

doi: 10.1097/MPA.0b013e3182328045
Original Articles

Objective The objective of this study was to evaluate the health-related quality of life (HRQL) burden of patients with neuroendocrine tumor (NET) and associations with demographic and clinical factors.

Methods Patients with NET were invited to participate in an online, anonymous survey consisting of 2 standardized HRQL measures, SF-36 and PROMIS-29, and a set of demographic and disease-related questions. General linear models were used to evaluate the associations between HRQL and demographic and clinical characteristics.

Results A total of 663 patients participated. These patients with NET demonstrated worse HRQL scores compared to the general population and to a sample of mixed cancer patients and survivors. Patients with current NET (tumor not surgically removed or came back after surgery), carcinoid syndrome, or an increased number of bowel movements or flushing episodes experience worsened HRQL compared to patients with NET without those characteristics after adjustment for other clinical and demographic variables.

Conclusions Patients with NET reported worse HRQL scores compared to the general population. NET-related symptoms such as diarrhea and flushing were associated with reduced quality of life in this cross-sectional study. Optimal management of NET and carcinoid syndrome may significantly improve HRQL among patients with NETs.

Supplemental Digital Content is available in the text.

From the *Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL; †Department of Gastrointestinal Medical Oncology, The University of Texas MD Anderson Cancer Center, Houston, TX; and ‡US Oncology Health Economics and Outcomes Research, Novartis Pharmaceuticals Corporation, East Hanover, NJ.

Received for publication November 9, 2010; accepted August 3, 2011.

Reprints: Jennifer L. Beaumont, MS, Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Room 713, 710 N. Lake Shore Dr, Chicago, IL 60611 (e-mail:

J Beaumont, S Choi, and D Cella have received grant funding for this project from Novartis Pharmaceuticals Corporation. D Cella has served as a consultant for Novartis. J Yao has served as a consultant for Novartis and Ipsen and has received grant funding from Novartis. Z Liu is an employee and stock owner of Novartis.

Research support provided by Novartis Pharmaceuticals.

Supplemental digital contents are available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (

Copyright © 2012 Wolters Kluwer Health, Inc. All rights reserved.