Brain (update of QLQ-BN20)

Gender Neutral
Type Module
Testing Phase I / II - in development
Principal investigator(s)
Linda Dirven
Leiden University Medical Center
Leiden, Netherlands
Study coordinator(s)
Marthe C.M. Peeters
Leiden University Medical Center
Leiden, Netherlands

Project summary

The European Organisation for Research and Treatment of Cancer (EORTC) QLQ-BN20 brain tumour module was developed and validated in 1996, with a phase IV validation in 2010. The aim of this module was 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.

Since the publication of the QLQ-BN20 in 1996, we have observed an increase in the use of this questionnaire, not only in glioma patients whom this questionnaire was developed in and validated for, but also in patients with other types of brain tumours, such as meningioma patients and patients with brain metastases from systemic cancer. Despite the fact that use of the QLQ-BN20 has tremendously contributed to insight into the quality of life of brain tumour patients, certain items of the questionnaire have raised issues (e.g. underestimation of symptoms due to poor formulation of the items), 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. The aim of this project is to update the QLQ-BN20 questionnaire.

Achievements

We have conducted a systematic review to extract all health-related quality of issues that are relevant for brain tumour patients. This resulted in an item list of 288 items that was evaluated by 27 patients and 6 healthcare professionals in phase 1 of the project.

We recently finished patient recruitment for phase 1.

The items that were rated as relevant during phase 1 (n=104) of the project are now being translated by the EORTC Translation Unit into the languages that are required in phase 3 of the project.

 

Future plans

We expect to start phase 3 in the beginning of October 2019.

For patients

The European Organisation for Research and Treatment of Cancer (EORTC) QLQ-BN20 brain tumour module was originally 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. Although the questionnaire has proven to be successful in measuring HRQoL, the questionnaire was developed more than 20 years ago. Since then, treatments have changed and patients may now experience different symptoms. These symptoms are not captured by the current questionnaire, warranting an update. The aim of this project is therefore to update the QLQ-BN20 questionnaire.

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