Models of Care

What is this study about?

People with primary brain tumours experience a unique set of challenges and symptoms. People often experience rapid functional declines and changes in daily life. These individuals and their family members must navigate healthcare services with reduced capacity while working with multiple specialists and trying to access community-based services.

We understand effective coordination of care can help these people to have continuous and connected care, and access to appropriate tests, treatment, and psychological and social support when needed. This study focuses on improving care coordination for primary brain tumours.  

What are we doing?

We are conducting three research studies aimed at improving care coordination for primary brain tumours by:

(i)                  understanding what is involved in care coordination for people with primary brain tumours and their caregivers,

(ii)                identifying training, support and resource needs of healthcare professionals who work as a care coordinator for these individuals

We have conducted a scoping review of current knowledge and scientific evidence about how care coordination is approached globally to learn about some of the key elements.

We have identified that one of the most common approaches to care coordination is through a designated care coordinator for primary brain tumours. However, there is a limited number of care coordinators working in primary brain tumour care in Australia and New Zealand.

We have interviewed healthcare professionals who work as care coordinators in Australia and New Zealand to understand their training and support needs, so we can boost and upskill these healthcare professionals in providing quality, coordinated brain cancer care.

We have also gathered opinions from consumer and professional stakeholders to develop a consensus idea on what is optimal care coordination for people living with primary brain tumours.

What do we expect to find or learn?

The findings from these studies will inform the development of a consensus idea of what care coordination for primary brain tumours involves. The findings will also guide how healthcare staff can be better supported and equipped for coordinating care and addressing unique challenges people with primary brain tumours face.

What are the next steps?

We are currently preparing publications resulting from this work.

Want more information about this study?

For further information please contact Dr Megan Jeon (megan.jeon@sydney.edu.au).