Long-term implications of rare brain tumours

Principal investigator(s)
Martin Klein
VUmc
Amsterdam, Netherlands
, Florien Boele
University of Leeds
Leeds, United Kingdom
Project coordinator(s)
Sé Frances
University of Leeds
Leeds, United Kingdom

Project summary

Rationale: Patients diagnosed with oligodendroglioma with IDH mutation and 1p/19q codeletion 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 health-related quality of life and neurocognitive functioning of these patients are largely unknown.

Objective: To describe health-related quality of life and neurocognitive functioning in long-term survivors of oligodendroglioma (with IDH mutation and 1p/19q codeletion). This knowledge can support healthcare professionals prepare patients for any long-term consequences of treatment.

Study design: Cross-sectional study involving questionnaire completion and neuropsychological tests.

Study population: Adult (≥18 years of age) patients diagnosed with a histologically confirmed oligodendroglioma with IDH mutation and 1p/19q co-deletion at least 5 years previously.

Target sample size: 200 patients in total. We anticipate approximately 35 centres will take part.

Outcomes: Information on disease and treatment (medical records), health-related quality of life, mood, fatigue, subjective neurocognitive functioning (patient-reported outcomes), and objective neurocognitive functioning (neuropsychological tests).

Achievements

We have obtained ethical approval for the UK sites, and are making progress with approvals in other countries too.

We anticipate to start patient recruitment in October 2020.

 

Future plans

This project runs until March 2023. We expect data collection to complete in August 2022.

 

Note:

Please contact us if you would like to join the study as a collaborator.

For patients

People diagnosed with oligodendroglioma are often treated with a combination of surgery, chemotherapy, and/or radiotherapy. Because these brain tumours are so rare, we do not know much about the long-term consequences of the tumour and/or its treatment on patients’ quality of life and memory and concentration (called cognitive functioning).

We want to describe the quality of life and cognitive functioning of people who live a long time with an oligodendroglioma. This can help doctors prepare patients for any long-term consequences of the disease and/or its treatment. It could help us to identify specific areas where more support is needed.