title: Comparison of health-related quality of life in patients with neuroendocrine tumors with quality of life in the general US population.
abstract: 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.
authors.affiliation: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL 60611, USA. j-beaumont@northwestern.edu
authors.forename: Jennifer L
authors.initials: JL
authors.lastname: Beaumont
authors.forename: David
authors.initials: D
authors.lastname: Cella
authors.forename: Alexandria T
authors.initials: AT
authors.lastname: Phan
authors.forename: Seung
authors.initials: S
authors.lastname: Choi
authors.forename: Zhimei
authors.initials: Z
authors.lastname: Liu
authors.forename: James C
authors.initials: JC
authors.lastname: Yao
mesh_terms: D016022:Case-Control Studies; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D003967:Diarrhea / Q000453:epidemiology / Q000523:psychology; D005260:Female; D005483:Flushing / Q000453:epidemiology / Q000523:psychology; D006306:Health Surveys; D006801:Humans; D020407:Internet; D016014:Linear Models; D008297:Male; D008303:Malignant Carcinoid Syndrome / Q000453:epidemiology / Q000523:psychology; D008875:Middle Aged; D015999:Multivariate Analysis; D018358:Neuroendocrine Tumors / Q000453:epidemiology / Q000503:physiopathology / Q000523:psychology*; D011788:Quality of Life; D011795:Surveys and Questionnaires; D014481:United States / Q000453:epidemiology