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Development of a questionnaire (EORTC module) to measure quality of life in patients with cholangiocarcinoma and gallbladder cancer, the EORTC QLQ-BIL21

Development of a questionnaire (EORTC module) to measure quality of life in patients with cholangiocarcinoma and gallbladder cancer, the EORTC QLQ-BIL21
Development of a questionnaire (EORTC module) to measure quality of life in patients with cholangiocarcinoma and gallbladder cancer, the EORTC QLQ-BIL21
Background: Quality of life measurement in cholangiocarcinoma and gallbladder cancer involves the assessment of patient-reported issues related to the symptoms, disease and treatment of these tumours. This study describes the development of the disease-specific quality of life (QoL) questionnaire for patients with cholangiocarcinoma and gallbladder cancer to supplement the European Organization for Research and Treatment of Cancer (EORTC)-QLQ C30 core cancer questionnaire.

Methods: Phases 1–3 of the guidelines for module development published by the EORTC were followed, with adaptations for incorporation of questions from existing modules.

Results: A total of 47 QoL issues (questions) were identified; 44 questions from the two related validated questionnaires, the EORTC QLQ-PAN26 (pancreatic module) and the EORTC QLQ-LMC21 (liver metastases module), two from the Functional Assessment of Cancer Therapy hepatobiliary module questionnaire in the literature search and one from healthcare professional interviews. Following phase 1 and 2 interviews with patients (n=101) and health care professionals (n=6), a 23-question provisional questionnaire was formulated. There were five questions from PAN26, 15 from LMC21 and three extra questions. In phase 3, the provisional item list was pre-tested in 52 patients in four languages and this resulted in a 21-item module.

Conclusion: This is the only disease-specific QoL questionnaire for patients with cholangiocarcinoma and gallbladder cancer, and initial assessments show it to be accurate and acceptable to patients in reflecting QoL in these diseases.

cholangiocarcinoma, gall bladder cancer, quality of life
0007-0920
587-592
Friend, E.
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Yadegarfar, G.
e1e5c022-335f-47dc-b5e9-4c804f253a8b
Byrne, C.
f22ab35b-8d98-41be-a89c-df9b1677dace
Johnson, C.D.
e50aa9cd-8c61-4fe3-a0b3-f51cc3a6c74a
Sezer, O.
ff00be2e-9982-4ac8-8da2-82278eb66135
Pucciarelli, S.
f480bfcc-5556-4433-bc62-5e7b72691abe
Pereira, S.P.
ae1ce624-818e-4e34-bf29-58dc48f498d7
Chie, W-C.
8eb0e851-d538-4f86-9157-26db946208a6
Banfield, A.
490ced35-e501-4628-8735-9044474c4670
Ramage, J.K.
6b7b38f2-cee2-4e6c-bcba-313c7bafedc6
Friend, E.
9bfd7c95-9e9e-4ab6-a0d3-250013285aa7
Yadegarfar, G.
e1e5c022-335f-47dc-b5e9-4c804f253a8b
Byrne, C.
f22ab35b-8d98-41be-a89c-df9b1677dace
Johnson, C.D.
e50aa9cd-8c61-4fe3-a0b3-f51cc3a6c74a
Sezer, O.
ff00be2e-9982-4ac8-8da2-82278eb66135
Pucciarelli, S.
f480bfcc-5556-4433-bc62-5e7b72691abe
Pereira, S.P.
ae1ce624-818e-4e34-bf29-58dc48f498d7
Chie, W-C.
8eb0e851-d538-4f86-9157-26db946208a6
Banfield, A.
490ced35-e501-4628-8735-9044474c4670
Ramage, J.K.
6b7b38f2-cee2-4e6c-bcba-313c7bafedc6

Friend, E., Yadegarfar, G., Byrne, C., Johnson, C.D., Sezer, O., Pucciarelli, S., Pereira, S.P., Chie, W-C., Banfield, A. and Ramage, J.K. (2011) Development of a questionnaire (EORTC module) to measure quality of life in patients with cholangiocarcinoma and gallbladder cancer, the EORTC QLQ-BIL21. British Journal of Cancer, 104 (4), 587-592. (doi:10.1038/sj.bjc.6606086). (PMID:21266979)

Record type: Article

Abstract

Background: Quality of life measurement in cholangiocarcinoma and gallbladder cancer involves the assessment of patient-reported issues related to the symptoms, disease and treatment of these tumours. This study describes the development of the disease-specific quality of life (QoL) questionnaire for patients with cholangiocarcinoma and gallbladder cancer to supplement the European Organization for Research and Treatment of Cancer (EORTC)-QLQ C30 core cancer questionnaire.

Methods: Phases 1–3 of the guidelines for module development published by the EORTC were followed, with adaptations for incorporation of questions from existing modules.

Results: A total of 47 QoL issues (questions) were identified; 44 questions from the two related validated questionnaires, the EORTC QLQ-PAN26 (pancreatic module) and the EORTC QLQ-LMC21 (liver metastases module), two from the Functional Assessment of Cancer Therapy hepatobiliary module questionnaire in the literature search and one from healthcare professional interviews. Following phase 1 and 2 interviews with patients (n=101) and health care professionals (n=6), a 23-question provisional questionnaire was formulated. There were five questions from PAN26, 15 from LMC21 and three extra questions. In phase 3, the provisional item list was pre-tested in 52 patients in four languages and this resulted in a 21-item module.

Conclusion: This is the only disease-specific QoL questionnaire for patients with cholangiocarcinoma and gallbladder cancer, and initial assessments show it to be accurate and acceptable to patients in reflecting QoL in these diseases.

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More information

Published date: 15 February 2011
Keywords: cholangiocarcinoma, gall bladder cancer, quality of life

Identifiers

Local EPrints ID: 179319
URI: http://eprints.soton.ac.uk/id/eprint/179319
ISSN: 0007-0920
PURE UUID: b50953f7-2489-48cc-b582-66f21a10ead1

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Date deposited: 01 Apr 2011 08:39
Last modified: 14 Mar 2024 02:48

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Contributors

Author: E. Friend
Author: G. Yadegarfar
Author: C. Byrne
Author: C.D. Johnson
Author: O. Sezer
Author: S. Pucciarelli
Author: S.P. Pereira
Author: W-C. Chie
Author: A. Banfield
Author: J.K. Ramage

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