Brain (update of QLQ-BN20)

Gender Neutral
Type Module
Testing Phase III - 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 1961, with a phase IV validation in 20102. 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 and validated for1,2, 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, 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.

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

If phase III is successfully completed, a phase IV international validation study will be initiated.

For patients

A brain tumour, but also its treatment, may cause several symptoms and signs. These symptoms and signs may consequently impact your health-related quality of life. Currently, there is a questionnaire available that measures health-related quality of life of brain tumour patients, the EORTC QLQ- BN20. However, this questionnaire has been developed more than 20 years ago, and since then treatment has changed considerably, including the adverse effects that patients’ experience. These new symptoms or signs are not sufficiently covered in the existing questionnaire. In addition, some items are poorly formulated, which could be improved. Based on these findings, it seems warranted to revise the current questionnaire. Therefore, the aim of this study is to update the current EORTC QLQ-BN20 questionnaire, to better measure health-related quality of life of brain tumour patients.

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