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
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
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
UR - https://www.mendeley.com/catalogue/1b1d0a1a-9d46-3b40-828c-e0963fcf4abd/
U2 - 10.1111/jne.13097
DO - 10.1111/jne.13097
M3 - Article
JO - Journal of Neuroendocrinology
JF - Journal of Neuroendocrinology
SN - 0953-8194
ER -