Funder: EORTC Quality of Life Group
Background: The European Organisation for Research and Treatment of cancer (EORTC) Quality of Life Questionnaire (QLQ)-BN20 brain tumour module was developed and validated in 1996, with a phase IV validation in 2010. This module was developed to evaluate the effects of the tumour and its treatment on symptoms, functions and health-related quality of life (HRQoL) of brain tumour patients, both in clinical trials and clinical practice. Despite the fact that use of the QLQ-BN20 has tremendously contributed to insight into the health-related quality of life (HRQoL) of brain tumour patients, certain items of the questionnaire have raised issues, and new treatments have been introduced, with different toxicity profiles not covered by the current measure. These observations have led to the recognition that a revision of the QLQ-BN20 is warranted.
Objective: The aim of this project is to update the current EORTC QLQ-BN20 questionnaire.
Study design: The methods for this prospective study will follow the EORTC Quality of Life Group guidelines for updating existing modules, including a literature review, interviews with patients and health care professionals (for the identification of items relevant to current/new treatments (phase I)), creation of a revised item list (phase II), and psychometric pilot testing (phase III).
Study team: This study is led by Dr Linda Dirven at the Leiden University Medical Center in the Netherlands. The local team consists of:
Dr Florien Boele
Andrea Gibson
Victoria Robins