Development of a disease-specific quality of life questionnaire module for patients with gastrointestinal neuroendocrine tumours

A. H G Davies, G. Larsson, J. Ardill, E. Friend, L. Jones, M. Falconi, R. Bettini, M. Koller, O. Sezer, C. Fleissner, B. Taal, J. M. Blazeby, J. K. Ramage

Research output: Contribution to journalArticle

Abstract

Quality of life (QoL) measurements are increasingly being used as an end point in cancer clinical trials. Standard generic QoL questionnaires may not assess symptoms produced by neuroendocrine tumours. Here we report the development of a disease-specific quality of life score questionnaire for patients with neuroendocrine tumours of the gut to supplement the EORTC core cancer questionnaire, the QLQ-C30. Phases 1-3 of the EORTC quality of life group guidelines for module development were used to design the new questionnaire. Forty-one relevant issues (questions) were generated after an extensive literature search. Following interviews of 15 health care workers and 35 patients, a 35 question provisional questionnaire was constructed. This was translated into seven European languages and pre-tested in 180 patients resulting in a 21-item module that will be validated in an international clinical trial. The EORTC QLQ-NET21 provides a site-specific module to supplement the QLQ-C30 for patients with neuroendocrine tumours.

Original languageEnglish
Pages (from-to)477-484
Number of pages8
JournalEuropean Journal of Cancer
Volume42
Issue number4
DOIs
Publication statusPublished - Mar 2006

Fingerprint

Neuroendocrine Tumors
Quality of Life
Clinical Trials
Neoplasms
Language
Surveys and Questionnaires
Guidelines
Interviews
Delivery of Health Care

Keywords

  • Carcinoid
  • Development
  • Disease-specific
  • Gastrointestinal
  • Module
  • Neuroendocrine
  • Quality of Life
  • Tumour

ASJC Scopus subject areas

  • Cancer Research
  • Hematology
  • Oncology

Cite this

Development of a disease-specific quality of life questionnaire module for patients with gastrointestinal neuroendocrine tumours. / Davies, A. H G; Larsson, G.; Ardill, J.; Friend, E.; Jones, L.; Falconi, M.; Bettini, R.; Koller, M.; Sezer, O.; Fleissner, C.; Taal, B.; Blazeby, J. M.; Ramage, J. K.

In: European Journal of Cancer, Vol. 42, No. 4, 03.2006, p. 477-484.

Research output: Contribution to journalArticle

Davies, AHG, Larsson, G, Ardill, J, Friend, E, Jones, L, Falconi, M, Bettini, R, Koller, M, Sezer, O, Fleissner, C, Taal, B, Blazeby, JM & Ramage, JK 2006, 'Development of a disease-specific quality of life questionnaire module for patients with gastrointestinal neuroendocrine tumours', European Journal of Cancer, vol. 42, no. 4, pp. 477-484. https://doi.org/10.1016/j.ejca.2005.10.025
Davies, A. H G ; Larsson, G. ; Ardill, J. ; Friend, E. ; Jones, L. ; Falconi, M. ; Bettini, R. ; Koller, M. ; Sezer, O. ; Fleissner, C. ; Taal, B. ; Blazeby, J. M. ; Ramage, J. K. / Development of a disease-specific quality of life questionnaire module for patients with gastrointestinal neuroendocrine tumours. In: European Journal of Cancer. 2006 ; Vol. 42, No. 4. pp. 477-484.
@article{6beadd901a91470b88173052b2ed3026,
title = "Development of a disease-specific quality of life questionnaire module for patients with gastrointestinal neuroendocrine tumours",
abstract = "Quality of life (QoL) measurements are increasingly being used as an end point in cancer clinical trials. Standard generic QoL questionnaires may not assess symptoms produced by neuroendocrine tumours. Here we report the development of a disease-specific quality of life score questionnaire for patients with neuroendocrine tumours of the gut to supplement the EORTC core cancer questionnaire, the QLQ-C30. Phases 1-3 of the EORTC quality of life group guidelines for module development were used to design the new questionnaire. Forty-one relevant issues (questions) were generated after an extensive literature search. Following interviews of 15 health care workers and 35 patients, a 35 question provisional questionnaire was constructed. This was translated into seven European languages and pre-tested in 180 patients resulting in a 21-item module that will be validated in an international clinical trial. The EORTC QLQ-NET21 provides a site-specific module to supplement the QLQ-C30 for patients with neuroendocrine tumours.",
keywords = "Carcinoid, Development, Disease-specific, Gastrointestinal, Module, Neuroendocrine, Quality of Life, Tumour",
author = "Davies, {A. H G} and G. Larsson and J. Ardill and E. Friend and L. Jones and M. Falconi and R. Bettini and M. Koller and O. Sezer and C. Fleissner and B. Taal and Blazeby, {J. M.} and Ramage, {J. K.}",
year = "2006",
month = "3",
doi = "10.1016/j.ejca.2005.10.025",
language = "English",
volume = "42",
pages = "477--484",
journal = "European Journal of Cancer",
issn = "0959-8049",
publisher = "Elsevier Ltd",
number = "4",

}

TY - JOUR

T1 - Development of a disease-specific quality of life questionnaire module for patients with gastrointestinal neuroendocrine tumours

AU - Davies, A. H G

AU - Larsson, G.

AU - Ardill, J.

AU - Friend, E.

AU - Jones, L.

AU - Falconi, M.

AU - Bettini, R.

AU - Koller, M.

AU - Sezer, O.

AU - Fleissner, C.

AU - Taal, B.

AU - Blazeby, J. M.

AU - Ramage, J. K.

PY - 2006/3

Y1 - 2006/3

N2 - Quality of life (QoL) measurements are increasingly being used as an end point in cancer clinical trials. Standard generic QoL questionnaires may not assess symptoms produced by neuroendocrine tumours. Here we report the development of a disease-specific quality of life score questionnaire for patients with neuroendocrine tumours of the gut to supplement the EORTC core cancer questionnaire, the QLQ-C30. Phases 1-3 of the EORTC quality of life group guidelines for module development were used to design the new questionnaire. Forty-one relevant issues (questions) were generated after an extensive literature search. Following interviews of 15 health care workers and 35 patients, a 35 question provisional questionnaire was constructed. This was translated into seven European languages and pre-tested in 180 patients resulting in a 21-item module that will be validated in an international clinical trial. The EORTC QLQ-NET21 provides a site-specific module to supplement the QLQ-C30 for patients with neuroendocrine tumours.

AB - Quality of life (QoL) measurements are increasingly being used as an end point in cancer clinical trials. Standard generic QoL questionnaires may not assess symptoms produced by neuroendocrine tumours. Here we report the development of a disease-specific quality of life score questionnaire for patients with neuroendocrine tumours of the gut to supplement the EORTC core cancer questionnaire, the QLQ-C30. Phases 1-3 of the EORTC quality of life group guidelines for module development were used to design the new questionnaire. Forty-one relevant issues (questions) were generated after an extensive literature search. Following interviews of 15 health care workers and 35 patients, a 35 question provisional questionnaire was constructed. This was translated into seven European languages and pre-tested in 180 patients resulting in a 21-item module that will be validated in an international clinical trial. The EORTC QLQ-NET21 provides a site-specific module to supplement the QLQ-C30 for patients with neuroendocrine tumours.

KW - Carcinoid

KW - Development

KW - Disease-specific

KW - Gastrointestinal

KW - Module

KW - Neuroendocrine

KW - Quality of Life

KW - Tumour

UR - http://www.scopus.com/inward/record.url?scp=32444445328&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=32444445328&partnerID=8YFLogxK

U2 - 10.1016/j.ejca.2005.10.025

DO - 10.1016/j.ejca.2005.10.025

M3 - Article

C2 - 16412628

AN - SCOPUS:32444445328

VL - 42

SP - 477

EP - 484

JO - European Journal of Cancer

JF - European Journal of Cancer

SN - 0959-8049

IS - 4

ER -