Development of a Quality of Life Questionnaire for Patients with Pancreatic Neuroendocrine Tumours (the PANNET module)

John Ramage, Elizabeth Friend, Jordan Randell, Barbara King, Debra Gray, Paz Fernandez Ortega, Mairead McNamara, Gregory Kaltsas, Massimo Falconi, Jaroslav Cwikla, Jaume Capdevila, Simona Grozinsky-Glasberg, Dalvinder Mandair, Eva Gamper, Raj Srirajaskanthan, Martin Weickert

Research output: Contribution to journalArticlepeer-review


Pancreatic neuroendocrine tumours (panNET) are heterogeneous neoplasms usually characterised by slow growth and secretion of hormones, which often cause symptoms. The effect of these symptoms on quality of life (QoL) has not previously been examined in detail. EORTC (European Organisation for Research and Treatment of Cancer) guidelines were followed in phases 1-3 to produce a potential module of questions usable for trials in panNET, focusing on three common types of panNET. For two less common types, a list of symptoms was constructed. Following an extensive literature search and phase 1a interviews with patients and healthcare workers, a long list of potential issues (169) was obtained. This list was shown to 12 patients from three countries in phase 1b interviews to check that no items were missed. The list was reduced to 57 issues. The list of issues was converted to questions, mainly from existing validated questions within the EORTC item library. The list of questions was then used in a phase 3 international study in eight countries using seven languages. A provisional module of 24 items is presented for use in nonfunctioning panNET, gastrinoma and insulinoma. This module increases knowledge concerning QoL in this condition and may be a useful adjunct in clinical trials. A phase 4 trial is being considered for validation of this questionnaire.

Original languageEnglish
Article numbere13097
JournalJournal of Neuroendocrinology
Issue number4
Publication statusPublished - 30 Jan 2022


  • gastrinoma
  • insulinoma
  • pancreatic neoplasm
  • pancreatic neuroendocrine tumour
  • quality of life

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