title: Validation of the EORTC QLQ-GINET21 questionnaire for assessing quality of life of patients with gastrointestinal neuroendocrine tumours.
abstract: BACKGROUND
  Quality of life is an important end point in clinical trials, yet there are few quality of life questionnaires for neuroendocrine tumours.
  
  
  METHODS
  This international multicentre validation study assesses the QLQ-GINET21 Quality of Life Questionnaire in 253 patients with gastrointestinal neuroendocrine tumours. All patients were requested to complete two quality of life questionnaires - the EORTC Core Quality of Life questionnaire (QLQ-C30) and the QLQ-GINET21 - at baseline, and at 3 and 6 months post-baseline; the psychometric properties of the questionnaire were then analysed.
  
  
  RESULTS
  Analysis of QLQ-GINET21 scales confirmed appropriate aggregation of the items, except for treatment-related symptoms, where weight gain showed low correlation with other questions in the scale; weight gain was therefore analysed as a single item. Internal consistency of scales using Cronbach's α coefficient was >0.7 for all parts of the QLQ-GINET21 at 6 months. Intraclass correlation was >0.85 for all scales. Discriminant validity was confirmed, with values <0.70 for all scales compared with each other.Scores changed in accordance with alterations in performance status and in response to expected clinical changes after therapies. Mean scores were similar for pancreatic and other tumours.
  
  
  CONCLUSIONS
  The QLQ-GINET21 is a valid and responsive tool for assessing quality of life in the gut, pancreas and liver neuroendocrine tumours.
authors: Department of Primary Care and Public Health, Imperial College London, London, UK.
authors: G
authors: G
authors: Yadegarfar
authors: L
authors: L
authors: Friend
authors: L
authors: L
authors: Jones
authors: L M
authors: LM
authors: Plum
authors: J
authors: J
authors: Ardill
authors: B
authors: B
authors: Taal
authors: G
authors: G
authors: Larsson
authors: K
authors: K
authors: Jeziorski
authors: D
authors: D
authors: Kwekkeboom
authors: J K
authors: JK
authors: Ramage
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003625:Data Collection; D005260:Female; D005770:Gastrointestinal Neoplasms / Q000523:psychology*; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D018358:Neuroendocrine Tumors / Q000523:psychology*; D009490:Neurosecretory Systems / Q000473:pathology; D011788:Quality of Life; D011795:Surveys and Questionnaires