Long-term implications of rare brain tumours
Project summary
Investigating late effects of treatment is a top research priority in cancer in general and neuro-oncology in particular. The emergence of new treatment options for patients with oligodendroglioma highlights the importance of studying the association between different anti-cancer treatments and long-term health-related quality of life and cognitive functioning. We therefore undertook this international cross-sectional study to investigate health-related quality of life and cognitive functioning of survivors of oligodendroglioma, at least 5 years since diagnosis. In 237 patients with oligodendroglioma, we identified continued issues related to cognitive, emotional, social, and physical functioning, as well as fatigue, sleep disturbances, and financial difficulties. Patients also have marked cognitive deficits on neuropsychological tests. Results can only partly be explained by treatment.
Future plans
We are still busy with dissemination efforts.
Publications
| Output of the project | Deliverables* |
| Main outcome: | |
| To investigate the extent of HRQOL impairment and cognitive deficits in long-term survivors of OII and OIII (with IDH mutation and 1p/19q codeletion). This knowledge can support health care professionals prepare patients for any long-term consequences of treatment, and may even aid in determining to what extent patients might benefit from supportive interventions. | Publication:
Boele, F. W., Frances, S. M., Darlix, A., Ducray, F., Cartalat, S., Guerdoux, E., … & Klein, M. (2025). Health-related quality of life and cognitive functioning in survivors of oligodendroglioma: an international cross-sectional investigation. Neuro-oncology, noaf172.
Presentations: – POLA Oligodendroglioma Workshop, Paris, September 2024. Invited presentation: Long-term functioning of patients with oligodendroglioma – EANO conference, Glasgow, October 2024. Oral presentation: Health-related quality of life and cognitive functioning in survivors of oligodendroglioma: an international cross-sectional investigation – SNO conference, Houston, November 2024*. Oral presentation: Health-related quality of life and cognitive functioning in survivors of oligodendroglioma: an international cross-sectional investigation *Won the SNO Survivorship Research Award – EANO conference, Prague, October 2025. Invited presentation: Quality of life in people with slow-growing tumours
Podcast episode: – Neuro-Oncology: The Podcast episode 26 September 2025. QOL and cognitive functioning in patients with oligodendroglioma |
| Secondary outcome(s), if applicable: | |
| To explore the possible associations of anti-tumour treatments with psychological distress and fatigue in patients with oligodendroglioma | Publication: PMDC approval received, in preparation for journal submission.
Gomez Vecchio T, Martin A, Frances SM, …, Boele FW (2026). Psychological distress and fatigue in oligodendroglioma survivors: an international matched-control study. Manuscript in preparation.
Presentations: Abstracts submitted for the 2026 EANO and SNO meetings (title: Psychological distress and fatigue in oligodendroglioma survivors: an international matched-control study). |
| To compare health utility scores of long-term oligodendroglioma survivors with the general population and identify the sociodemographic, clinical, and country-level factors influencing variation in utility among survivors | Publication: Co-author feedback received, in preparation for PMDC approval.
Martin A, Tebaldi D, Mattock R, …, Boele F (2026). Predictors of preference-based health utility scores among 231 oligodendroglioma survivors across nine European countries: a matched-control study. Manuscript in preparation.
Presentation: Abstract submitted for the 2026 EANO meeting (title: Predictors of preference-based health utility scores among 231 oligodendroglioma survivors across nine European countries: a matched-control study). |
| To explore support and information needs in relation to QOL and cognitive outcomes | No output yet. Following publications of the above manuscripts, a short report will be prepared. |
| Evaluate the association of antiseizure medication with depression, anxiety, and neurocognitive functioning | Publication: Analyses performed, manuscript in preparation for co-author feedback.
Laribi L, …., Boele F (2026). Impact of antiseizure medications on mood, cognition and health-related quality of life in oligodendroglioma: a retrospective cohort study. Manuscript in preparation. |