Funded through the generosity of donors

Mary Jane Lim-Fat – Sunnybrook Health Sciences Centre – Toronto, ON

Project Title: “Assessing molecular, clinical and imaging predictors of response, quality of life measures and neurocognitive outcomes in young patients with low grade glioma undergoing multimodality therapy”

Description of Project:

Low grade gliomas (LGGs) most commonly occur in adolescents and young adults (15-39 years old). Treatment strategies are varied and may include a combination of radiation and chemotherapy, and molecular information has helped reframed the role for possible targeted therapies. Patients with LGG may live with their diagnosis for several decades; therefore, it is of utmost importance that the chosen treatment strategy not only optimize survival, but also allows the patient to maintain a high quality of life (QoL) and neurocognitive function (NCF). How treatment strategies differentially affect QoL and NCF are unknown, which has hindered progress towards the identification of optimal treatment and support strategies.

In this project, we will investigate how QoL and NCF are impacted by different treatment strategies in young adult patients, and how these metrics intersect with molecular tumour marker data. This data is essential towards improving the long-term outcomes in this population, and will equip health care providers with the knowledge on how to better develop the goals of care and discuss treatment strategies with patients. It may also result in a more proactive timeline for interventions, including those of psychosocial nature, which help maintain/improve QoL in patients with chronic illnesses.

What receiving this award means:

“As a new investigator interested in developing more precise and individualized treatments for young adults with brain tumours, I am very grateful to Brain Tumour Foundation of Canada for helping launch my research career. This grant will help fund one of many future collaborative endeavors to help improve the care and outcomes of young adult patients with glioma.”

Midpoint Review- October 2023

Since receiving this award, we have established collaborations with specialists to establish a workflow in conducting and assessing the results of our battery neurocognitive function (NCF) tests. Our first participants were enrolled in 2021 and there are currently 20 patients that are being followed on this multimodality longitudinal study with a goal to enroll another 20. Our project has highlighted the need for a concerted effort across Canada to improve AYA care, and has contributed to the formation of the Canadian AYA Neuro-Oncology Network (CANON).

Update – November 2024

We would like to extend our sincerest thanks for your support of this project, including its extension until October 2025.

Since the last report, we have achieved the following:

1. 6 adolescent and young adults (AYAs) diagnosed with low-grade gliomas have been enrolled to the study. Among these, 2 have also completed follow-up for their neurocognitive function (NCF).
2. In total, we have now have 21 participants on study, and a total of 49 NCF tests have been completed. Our site is actively recruiting participants as we see them in clinic.
3. Through the Canadian AYA Neuro-Oncology Network (CANON), we launched an initiative to establish a national database that will capture relevant clinical information, including advanced sequencing results and outcomes, of AYAs diagnosed with CNS cancers. Given the rarity of these cancers, this database will be critical to advancing our understanding of the natural history of these cancers and in optimizing treatment selection. The latter is particularly relevant as new therapeutics have become increasingly driven by tumor molecular profiling. Leveraging this budding infrastructure and our experience from this project, we plan to integrate measures of quality of life and neurocognitive testing at key points of patients’ treatment journey once the database is established. We anticipate that this will support the development of patient-centered approaches in future research projects, and as standards of care are developed in this population.
4. We plan to continue accruing patients until the proposed sample size is reached, and willaim to present the findings at one of the upcoming neuro-oncology meetings in 2025-2026.
   

   
   FINAL REPORT- APRIL 2026

   Over the course of the study, over 30+ neurocognitive function (NCF) tests were performed across multiple timepoints throughout the participants’ disease trajectories. Through this data, we have learnt that tumor location, age, and diagnoses can influence baseline scores, contributing to high inter-individual variability. Importantly, scores remained relatively consistent during follow up visits, with minimal intra-individual variability – a finding that strengths confidence in the reliability of the NCF battery chosen.

   Building upon this, we also expanded upon this project to incorporate two additional quality-oflife (QOLs) surveys. At each NCF assessment, participants also completed the MD Anderson Symptom Inventory Brain Tumor (MDASI-BT), which is used to assess severity of core and brain-tumor specific symptoms, as well as interference with daily living; and the Functional Assessment of Chronic Illness Therapy’s Spiritual Well-Being 12 Module (FACIT-Sp12), a widely-used measure of spiritual well-being. The same trends as NCF were found: there was high inter-individual variability, but low intra-individual variability, suggesting a potential correlation between NCF and QOL. These findings were presented at Sunnybrook Research Institute’s 2025 Research Day. However, more data points are needed to confirm this relationship, and more importantly, over the longer term, particularly when there is a change in disease status or new therapies initiated.

   Beyond the research, this project has also had a significant and meaningful local impact. Several members of our team have developed the skills to administer and score NCF assessments consistently; and a robust workflow has been established to ensure NCF testing can be completed smoothly during routine clinic visits. Given the relatively long prognosis in this population— which may continue to extend was novel therapeutics become available—these mechanisms ensure that we can continue to accumulate data over the long-term, so that we can better identify and respond to patients’ evolving needs throughout the course of their disease. Our team is also exploring whether any NCFs can be adapted for virtual use, to reduce patient burden for on-site visits; and incorporation of either NCF or QOLs at the national level, through the Canadian AYA Neuro-Oncology Network (CANON).