Understanding the long-term implications of treatment of rare brain tumours on health-related quality of life: a European cross-sectional study

Funder: EORTC Quality of Life Group

Background: The prognosis of brain tumours varies greatly per subgroup and can depend on the molecular profile of the tumour. Patients diagnosed with oligodendroglioma with a specific molecular profile represent rare tumour groups (about 10% of adult gliomas) with relatively favourable prognosis (median survival between 8 and 12 years). These patients are often treated with surgery, chemotherapy and/or radiotherapy. However, as patients live for a long period of time, they may also experience long-term toxic side-effects of treatment.
The long-term consequences of treatment- and disease-related factors on quality of life and cognitive functioning of these patients is largely unknown. Because these tumours are quite rare, we need to work collaboratively across Europe. More knowledge on the long-term effects of the disease and treatment can support healthcare professionals prepare patients for any long-term consequences of treatment, and may aid in determining to what extent patients may benefit from supportive interventions.

Aims: To investigate the quality of life and cognitive functioning of long-term survivors of oligodendroglioma (with IDH mutation and 1p/19q codeletion).

Methods: This is a cross-sectional study building upon our ongoing brain tumour survivorship work. In approximately 35 centres across Europe, we will invite adult patients diagnosed with oligodendroglioma (with IDH mutation and 1p/19q co-deletion) at least 5 years previously to take part in the study. We will collect detailed information on their disease trajectory and treatments from the medical records. Participants will be asked to complete questionnaires about their quality of life, mood, and fatigue. Cognitive functioning will be assessed with tests.

Study team:
Dr Florien Boele
Prof Galina Velikova
Prof Martin Klein (VU University Amsterdam)
Sé Frances