Clinical outcomes of brain tumors

The research group on clinical outcomes in Neuro-Oncology focuses on non-traditional outcome measures in patients with a primary or secondary brain tumor (glioma, meningioma, and brain metastases), particularly health-related quality of life (HRQoL), functioning in daily life, clinical symptoms (e.g. epilepsy, cognitive functioning), and radiological outcomes.

The research group has the aim to improve the outcome of patients in terms of functioning, wellbeing and HRQoL, by:

  • Evaluating and developing new measurement tools to better assess the patient’s symptoms, functioning and wellbeing;
  • Evaluating the impact of different cancer treatments in large clinical trials on clinical outcomes;
  • Reducing the impact of brain tumor related epilepsy on the patient’s life;
  • Developing and evaluating palliative care programs throughout the disease course, including advance care planning.

Development of new outcome measures in brain tumor patients

Over the past 10 years the research group has led major projects for the development of new patient-reported outcome measures. In close collaboration with the EORTC Brain Tumor Group and Quality of Life Group the research group has developed an instrument to assess the instrumental activities of daily living (IADL) in brain tumor patients: the EORTC IADL-BN32 questionnaire. The group has also led an initiative to revise the EORTC-BN20 questionnaire, which is one of the most commonly used outcome measure to assess symptom burden in brain tumor patients. New initiatives have been started to further refine the use of current HRQoL questionnaires, by developing recommendations for the use of a summary score and improving outcome assessment in patients with progressive disease. In collaboration with FDA, EMA, EORTC and various stakeholders internationally recognized standards of patient-reported outcome assessments in brain tumor patients have been developed.

Epilepsy in patients with a brain tumor

Epilepsy is one of the most common and impactful symptoms in patients with a brain tumor, especially glioma, which may compromise patient’s functioning, wellbeing and HRQoL. The research group aims to minimize the impact of seizures on patient’s lives, by identifying risk factors underlying the development of seizures, evaluating the effectiveness of different treatment strategies, and evaluating the value of epilepsy as a clinical outcome measure in neuro-oncology. On an international level we are leading a research project in collaboration with EORTC to combine data from large clinical trials in brain tumor patients with epilepsy.

Projects

Key publications

Team

Clinical Principal Investigator

 M.J.B. Taphoorn, MD, PhD
Professor of Neurology
Consultant Neurologist/Neuro-oncologist
Focus: Clinical outcomes in brain tumor patients

J.A.F. Koekkoek, MD, PhD
Consultant Neurologist/Neuro-oncologist
Focus: Clinical outcomes in brain tumor patients

Non-Clinical Principal Investigator

Dirven, PhD
Senior researcher
Focus: Clinical outcomes in brain tumor patients