Generously funded by Donors of Brain Tumour Foundation of Canada

Angela Sekely – Princess Margaret Cancer Centre – Toronto, Ont.

Project title: “Development and Evaluation of a Psychoeducation Resource for Cognitive Systems in Adults with Primary Brain Tumours”

Description of project:

Although primary brain tumours vary widely in prognosis, people living with any brain tumour are at increased risk of cognitive deficits. These cognitive deficits can affect their ability to manage daily tasks, maintain social relationships, and continue to work or remain in school. Cognitive assessment and rehabilitation are warranted, but neuropsychological services for neuro-oncology patients are limited in Canada. The purpose of this research is to develop and evaluate a psychoeducational resource for brain tumour patients and their caregivers that provides information about possible effects of brain tumours on cognition, and evidence-based behavioural strategies to mitigate those effects. The goal is to make this resource available across the country to facilitate equitable access to cognitive supportive care strategies.

This project will comprise three phases. In Phase I, the patient education resource will be developed in partnership with individuals with brain tumours, caregivers and neuro-oncology clinic staff. In Phase II, the acceptability, feasibility, and appropriateness of the patient education resource will be evaluated. In Phase III, the study results will be presented at national and international neuro-oncology meetings, shared with relevant stakeholders such as Brain Tumour Foundation of Canada to be widely distributed, and published in a peer-reviewed oncology journal

What receiving this award means:

We are deeply grateful to Brain Tumour Foundation of Canada for their generous support of this research project. This funding plays a vital role in helping us create a meaningful tool to empower individuals with brain tumours with knowledge and strategies to address cognitive challenges as they navigate their diagnosis, treatment, and survivorship. With this support, we can continue to make meaningful strides in addressing the cognitive symptoms faced by individuals with brain tumours and their families and reduce the impact of cognitive deficits on daily life.

Update – December 2025

In Phase I, we applied co-design methods to develop psychoeducational resources in partnership with an advisory committee comprising individuals with lived experience and clinical staff from the Pencer Brain Tumour Centre. The project and preliminary concepts were also presented at University Health Network (UHN) Neuropsychology Rounds and the PMCC Cancer-Related Cognitive Impairment Research Group to refine content and ensure clinical relevance. Three brochures were developed and subsequently reviewed by the PMCC Patient Education Department to ensure lay language, clarity, and readability: 1) How brain tumours can change thinking abilities, 2) Brain tumours and thinking: Tips for managing changes, and 3) Brain tumours and thinking: Tips for caregivers, family members, and friends

In addition, content from these brochures informed the development of a psychoeducational video, which is being developed in collaboration with PMCC Cancer Education Department. The video script has been completed, a storyboard with proposed imagery has been created, and the team is currently working on the animatic (rough animation). Full animation will follow.

Phase II evaluates the acceptability, feasibility, and appropriateness of the psychoeducational resources with 28 brain tumour patients and their caregivers. We submitted an ethics amendment to include the final brochure materials; however, this amendment remained under review for 72 days due to delays at the UHN Research Ethics Board. Approval was granted on November 26, 2025, allowing us to begin data collection. To date, we have recruited 12 participants (5 patients and 7 caregivers), and recruitment is ongoing.

We anticipate completing participant recruitment in January 2026. The Principal Investigator will be on maternity leave from January 2026 to January 2027, and BTFC has confirmed an extension to accommodate this period. Following the return from leave, we will complete Phase II, which involves data collection, data analysis, and revision and refinement of the psychoeducational resources based on participant feedback (estimated completion time: 6 months).

Phase III will focus on dissemination. Findings will be presented at national and international conferences, shared with key stakeholders, including BTFC and the Canadian Cancer Society, and prepared for manuscript submission and publication. We anticipate that this will take the final 4-6 months of the 2-year grant period to complete.