Development of a Questionnaire (Eortc Module) to Measure Quality of Life in Patients With Cholangiocarcinoma and Gallbladder Cancer, the Eortc Qlq-Bil21 Publisher Pubmed



Friend E¹ ; Yadegarfar G^{1, 2} ; Byrne C³ ; Johnson CD⁴ ; Sezer O⁵ ; Pucciarelli S⁶ ; Pereira SP⁷ ; Chie WC⁸ ; Banfield A¹ ; Ramage JK^{1, 9}
Source: British Journal of Cancer Published:2011

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 (n101) and health care professionals (n6), 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. © 2011 Cancer Research UK. All rights reserved.