TY - JOUR
T1 - Development of a Quality of Life Questionnaire for Patients with Pancreatic Neuroendocrine Tumours (the PANNET module)
AU - Ramage, John
AU - Friend, Elizabeth
AU - Randell, Jordan
AU - King, Barbara
AU - Gray, Debra
AU - Fernandez Ortega, Paz
AU - McNamara, Mairead
AU - Kaltsas, Gregory
AU - Falconi, Massimo
AU - Cwikla, Jaroslav
AU - Capdevila, Jaume
AU - Grozinsky-Glasberg, Simona
AU - Mandair, Dalvinder
AU - Gamper, Eva
AU - Srirajaskanthan, Raj
AU - Weickert, Martin
N1 - Funding Information:
Thanks are due to all the Healthcare workers in all the centres that put in so much time and effort in completing this difficult study. The work was supported by a grant from the EORTC Quality of Life group as well as the UK NET Patient Foundation (now Neuroendocrine Cancer UK). Other centres that contributed<5 patients: Emma Ramsey, Southampton NET Unit, UK; Angela Frilling, Imperial College NET Unit, London, UK, Vasilis Vasiliou, Bank of Cyprus Oncology Centre, Cyprus.
Publisher Copyright:
© 2022 The Authors. Journal of Neuroendocrinology published by John Wiley & Sons Ltd on behalf of British Society for Neuroendocrinology.
PY - 2022/1/30
Y1 - 2022/1/30
N2 - 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.
AB - 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.
KW - gastrinoma
KW - insulinoma
KW - pancreatic neoplasm
KW - pancreatic neuroendocrine tumour
KW - quality of life
UR - https://www.mendeley.com/catalogue/1b1d0a1a-9d46-3b40-828c-e0963fcf4abd/
UR - http://www.scopus.com/inward/record.url?scp=85129778465&partnerID=8YFLogxK
U2 - 10.1111/jne.13097
DO - 10.1111/jne.13097
M3 - Article
VL - 34
JO - Journal of Neuroendocrinology
JF - Journal of Neuroendocrinology
SN - 0953-8194
IS - 4
M1 - e13097
ER -