• G Yadegarfar, L Friend, L Jones, L M Plum, J Ardill, B Taal, G Larsson, K Jeziorski, D Kwekkeboom, J K Ramage, and EORTC Quality of Life Group.
• Department of Primary Care and Public Health, Imperial College London, London, UK.
• Br. J. Cancer. 2013 Feb 5; 108 (2): 301-10.

BackgroundQuality of life is an important end point in clinical trials, yet there are few quality of life questionnaires for neuroendocrine tumours.MethodsThis 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.ResultsAnalysis 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.ConclusionThe QLQ-GINET21 is a valid and responsive tool for assessing quality of life in the gut, pancreas and liver neuroendocrine tumours.

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