Public Health Mental health Policy, research + analysis

Navigating the unknown: A call for nationwide brain cancer care coordination

November 2024

Navigating the unknown: A call for nationwide brain cancer care coordination

Each year, approximately 2,000 Australian babies, children and adults are diagnosed with more than 100 different types of brain cancer. Brain cancer presents unique and complex challenges with patients and carers struggling to coordinate care across specialties and between active surveillance (“wait and see”) periods.

Five-year survival rates for brain cancer have improved by just two per cent over 30 years.

Only 22 per cent of Australians with brain cancer will survive five years or longer.

Brain tumours are disabling and only worsen with time, as patients require additional support services and therapies. Family and carers who support people with brain cancer bear a heavy burden, and must navigate a constantly changing set of symptoms, needs and behavioural changes, including aggression, irritability, anxiety and depression.

The financial cost of disability support for Australians with brain cancer is 4-5 times greater than the National Disability Insurance Scheme national plan average.

The need for better coordination

There is an urgent need for brain cancer care coordinators (BCCCs) throughout Australia, who improve outcomes for patients, carers and families, and the health system.

24 per cent decrease in length of stay for patients with access to a BCCC.

However, there are few BCCCs available nationwide, with over 90% of the few in major cities on the east coast.

There are only 29 brain cancer care coordinators nationwide, working in just 20.6 full-time equivalent positions.

A quarter of roles are fully or partially funded by non-profit organisations.

A roundtable was convened by the Australian Brain Tumour Collaborative and facilitated by Evohealth in November 2024, to discuss the gaps in cancer care navigation faced by patients, families and carers in Australia, and how BCCCs can fill these gaps.

Together, roundtable attendees identified five key steps for policymakers to improve outcomes for the brain cancer community:

Establish a national, diverse and multidisciplinary working group to lead the design, development, and strategic guidance of the BCCC program.
Co-design a national Model of Care that can achieve equity and consistency across Australia while remaining flexible for local needs adaptation and effective integration within the broader health system.
Conduct a thorough assessment of healthcare sites across Australia to identify those with the infrastructure, workforce, and capacity to implement the BCCC model of care effectively.
Establish clear guidelines for the qualifications, skills, and career pathways of BCCCs, creating a foundation for a sustainable and capable workforce.
Create a governance structure that ensures accountability, quality, and consistency across the BCCC program, with oversight from a central organisation.

References:

Department of Health and Aged Care. Australian Brain Cancer Mission: Department of Health and Aged Care; 2024 [Available from: https://www.health.gov.au/our-work/mrff-australian-brain-cancer-mission.
Cancer Australia. Brain cancer: Cancer Australia; 2024 [Available from: https://www.canceraustralia.gov.au/cancer-types/brain-cancer/statistics.
Cancer Australia. 5-year relative survival from diagnosis: National Cancer Control Indicators; 2022 [Available from: https://ncci.canceraustralia.gov.au/outcomes/relative-survival-rate/5-year-relative-survival-diagnosis.
Australian Institute of Health and Welfare. Brain and other central nervous system cancers: Australian Institute of Health and Welfare; 2017 [Available from: https://www.aihw.gov.au/getmedia/d2914a17-052e-45bb-bbd3-17047c7d5da1/20566.pdf?v=20230605165404&inline=true.
Paterson C, Roberts C, Li J, Chapman M, Strickland K, Johnston N, et al. What are the experiences of supportive care in people affected by brain cancer and their informal caregivers: A qualitative systematic review. J Cancer Surviv. 2024;18(5):1608-29.
NDIS. National Dashboard as at 30 June 2024: NDIS; 2024 [Available from: < a href="https://www.ndis.gov.au/media/7203/download?attachment" target="blank">https://www.ndis.gov.au/media/7203/download?attachment.
National Advocacy Service. NDIS Plan Statistics. In: Wilson M, editor.: National Advocacy Service,; 2024.
Hong M, Leigh L, Ballinger C, Reeves P, Gooley A, Nixon S, et al. The impact of brain cancer care coordinators on healthcare utilization and outcomes in patients with glioblastoma. Neuro-Oncology Practice. 2024;11(5):575-82.
National Advocacy Service. Survey of Brain Cancer Care Coordinators in Australia, October 2024. In: Service NA, editor. 2024.