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 QLQGINET21) 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, semistructured interviews with healthcare professionals (HCP) and pNET patients using a scoring system for selecting and prioritising issues (phase 1) and pretesting (phase 3).

Results: 87 issues from the literature were used in phase 1a interviews. Phase 1a interviews in 4 languages generated 104 issues ;19 from HCP (n=15) and 85 from patients (n=23; 8 non-functioning, 7 insulinoma, 8 gastrinoma). After analysis, 78 issues from the literature (55) and interviews (23) were used in phase 1b interviews in 3 languages (n=12; 4 non-functioning, 6 gastrinoma, 3 insulinoma) leading to 57 issues being converted into questions (phase 2) for pre-testing in phase 3. Slower phase 1a recruitment of Glucagonoma (n=8) and VIPoma (n=10) in 3 languages prevented inclusion in the module and analysed separately. The provisional phase 3 PNET module was tested in 59 patients (23 non-functioning, 19 gastrinoma, 17 insulinoma) in 7 languages.

Conclusion: A provisional phase 3 module of QoL in pNET has been developed and tested in 7 countries based on the literature and views of patients and healthcare professionals.