Overview
Initiative type
Model of Care
Status
Deliver
Published
June 2026
Summary
Over two thirds of people with a brain tumour report communication difficulties. We have developed and evaluated CanCommunicate, a new intervention to meet this need.
Dates: November 2023 - September 2024
Implementation sites: Princess Alexandra Hospital
Partnerships: Metro South Health, Metro North Health, University of Queensland, Griffith University, Gold Coast Health, La Trobe University, Queensland University of Technology, West Moreton Health
This project was presented as a Poster at CEQ Showcase 2026 (PDF 385KB).
Aim
Our aim was to evaluate the effects of CanCommunicate on communication and quality of life, along with consumer perspectives, in people with brain tumour.
Outcomes
- CanCommunicate led to improvements in self-reported communication disability and achievement of communication goals, but not quality of life.
- Consumers perceived the intervention favourably.
Background
In Australia, brain tumours have a five-year survival rate of only 25% (AIHW, 2017) and a lifetime cost to an individual of $1.3 million AUD (CanTeen, 2017). Brain tumours are associated with reduced quality of life and poor social participation.
Communication difficulties can be caused by the tumour itself or treatment, with over 2/3 of people with a brain tumour reporting some level of communication disturbance (Brownsett et al., 2019). These difficulties can present as trouble understanding others and expressing oneself (e.g., unable to express wishes during advanced care planning with family and health professionals), and difficulties with writing and reading.
Our initial study explored the unmet needs of people with a brain tumour and their families within Metro South Health. We found that the majority of people with a brain tumour did not receive speech pathology management of their communication difficulties, which caused substantial distress on discharge. This situation is not isolated to Metro South Health, with a national survey finding that less than 30% of people with brain tumours in Australia receive speech pathology services (Halkett et al., 2022). Furthermore, when people with brain tumours received speech pathology intervention there is no evidence-based intervention designed specifically to meet their communication needs.
We used this unmet need data, along with consumer perspectives, to develop a new intervention called CanCommunicate to meet this need.
Methods
To meet the evidence-practice gap, we have developed, piloted and trialled, a novel intervention called 'CanCommunicate' for people with communication difficulties following brain tumour. CanCommunicate's development was guided by the Medical Research Council's (UK) best practice approach for developing complex healthcare interventions (Craig et al., 2008). The content and format of CanCommunicate was influenced by clinical guidelines for other neurological populations (INCOG 2.0 Cognitive Communication and Social Cognition disorders, (Togher et al., 2023); Clinical Guidelines for Stroke Management (Stroke Foundation, n.d.)); a chart audit of communication management for people with a brain tumour (n = 448); interviews with people with a brain tumour and their significant others (n = 21); and a consumer advisory group. CanCommunicate was designed as a person-centred, goal-based intervention that could be accessed through in-person or telehealth delivery.
We evaluated CanCommunicate using a randomised controlled trial to explore its efficacy for improving perceived communication disability and quality of life in people with brain tumour, compared to usual care. We also collected participant perspectives of the intervention through consumer interviews. Thirty-nine participants were randomised to commence CanCommunicate (immediate intervention, n = 24) or were placed on a wait list (control, n = 15). CanCommunicate led to improvements in self-reported communication disability and achievement of communication goals, but not quality of life. Participants perceived the intervention favourably.
Discussion
To date, the project is the largest randomised controlled trial of a communication intervention with people with brain tumour. Pivotal to the success of the project was the diverse multidisciplinary team and the consumer involvement in the co-design of the intervention.
The key limitations of the study were:
- The COVID-19 global pandemic which led to a delayed start to the project and a smaller number of participants recruited.
- Due to the nature of a brain tumour and the likely disease progression, a number of participants dropped out.
- The use of self-report measures rather than objective measures of change in communication function may have also impacted the study results.
- For some participants, sessions were impacted by technological issues.
To counteract these limitations, future iterations of CanCommunicate could incorporate technological support and participant training prior to each participant's first online session. Future research could use objective measures of communication function.
Finally, future projects could implement CanCommunicate throughout the state using a research translation framework to improve access to communication services for all people with a brain tumour and their families within Queensland.
References
Australian Institute of Health and Welfare (2017). Brain and other central nervous system cancers. Cat. no. CAN 106. Canberra: AIHW.
Brownsett, S. L. E., Ramajoo, K., Copland, D., McMahon, K. L., Robinson, G., Drummond, K., Jeffree, R. L., Olson, S., Ong, B., & De Zubicaray, G. (2019). Language deficits following dominant hemisphere tumour resection are significantly underestimated by syndrome-based aphasia assessments [Article]. Aphasiology, 33(10), 1163-1181.
CanTeen Australia (2017). The economic cost of cancer in adolescents and young adults.
Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I., & Petticrew, M. (2008). Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ, 337(a1655).
Halkett, G. K. B., Berg, M. N., Daudu, D., Dhillon, H. M., Koh, E. S., Ownsworth, T., Lobb, E., Phillips, J., Langbecker, D., Agar, M., & Hovey, E. (2022). Supportive care of patients diagnosed with high grade glioma and their carers in Australia. Journal of Neuro-Oncology, 157(3), 475-485.
Stroke Foundation (n.d.). Australian and New Zealand Living Clinical Guidelines for Stroke Management. Available at https://informme.org.au/en/Guidelines/Clinical-Guidelines-for-Stroke-Management. Accessed 0/2/2026.
Togher, L., Douglas, J., Turkstra, L. S., Welch-West, P., Janzen, S., Harnett, A., Kennedy, M., Kua, A., Patsakos, E., Ponsford, J., Teasell, R., Bayley, M. T., & Wiseman-Hakes, C. (2023). INCOG 2.0 Guidelines for Cognitive Rehabilitation Following Traumatic Brain Injury, Part IV: Cognitive-Communication and Social Cognition Disorders. The Journal of Head Trauma Rehabilitation, 38(1), 65-82.
Key contact
Erin Kelly
Senior Speech Pathologist
Princess Alexandra Hospital, Metro South Hospital and Health Service