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Development of an EORTC Quality of Life Questionnaire for Patients with Pancreatic Neuroendocrine Tumours: Phases 1-3


Introduction: Measuring quality of life (QoL) in Pancreatic Neuroendocrine Tumours (pNET) involves assessing issues from symptoms, disease and treatment. The validated gastrointestinal NETs module (EORTC QLQ-GINET21) is used with EORTC QLQ-C30 but there are concerns it inadequately measures QoL in pNET.

Aim(s): To develop a questionnaire for patients with pNET by including some GINET21 issues and adding pNET issues not in the QLQ-C30.

Materials and methods: EORTC Guidelines for Developing Questionnaire Modules (updating an existing module) were followed. QoL issues relevant to pNET patients were collected from literature review, semi-structured interviews with healthcare professionals (HCP) and pNET patients using a scoring system for selecting and prioritising issues (phase 1) and pre-testing (phase 3).

Conference: 17th Annual ENETSConcerence (2020)

Presenting Author:

Authors: Friend E, Gray D, Fernández Ortega P, McNamara M, Kaltsas G,

Keywords: research, neuroendocrine, insulinoma, gastrinoma, non-functioning, VIPoma, Glucagonoma, questionnaire, quality of life,

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