Brain cancer can be a highly debilitating disease with devastating effects on patients and their families. The diagnosis is usually a big shock and comes with a number of difficult considerations.
Suddenly, there are crucial and complex decisions to make about treatment which are time-critical and can affect prognosis. Within the hospital system the patient may have rapid and ongoing exposure to many different people and teams, equipment, tests, reports and opinions. Plus, the patient has to consider how it will affect their job and how to tell family and friends. Negotiating all of this is very difficult, stressful and time-consuming.
Caring for a loved one with brain cancer is complex and challenging, as it can result in physical, cognitive and emotional problems, not to mention the huge financial burden families often face as a result. Not only is the patient themself often not able to continue working, but their family members may also have to stop work to care for them.
Accessing services can be complicated and brain tumour patients are not given priority by rehabilitation services. There is evidence that patients and carers lack sufficient information on a number of fronts.
Neuro-oncology nurse specialists
Dedicated specialist nurses or other health professionals to coordinate care for brain cancer patients can help to navigate this journey. Very few hospitals have created these roles and the positions that do exist are currently funded through charities. Cure Brain Cancer Foundation believes that every hospital treating brain cancer patients should have a neuro-oncology nurse specialist and that they should be funded by government as part of the healthcare system.
In 2013, Cure Brain Cancer took the first step towards investigating this and commissioned ACG Research and Healthcare to conduct a scoping study (an analysis of the current state of brain cancer care in Australia) to understand the challenges and obstacles involved. They had already developed a Coordination of Care Model, designed to prepare the health system so that research can be conducted as a routine part of patient care. Cure Brain Cancer wanted to see if that could be adapted to brain cancer in Australia.
The model is unique because it prepares the health system to receive the patient and is proactive, rather than the current reactive, interrupted patient journey. It aligns advances in science with progress in healthcare, so that the system can ultimately support personalised cancer care and translational research, at the same time as caring for patients.
The now-completed scoping study has provided what is arguably the most comprehensive assessment of brain cancer care in Australia. It has also given us a basis for a practical, achievable plan of action through which Australia can lead the way in brain cancer care and research.
The next step is to secure funding for a pilot project which would work across three phases:
- Phase 1: Introducing neuro-oncology nurse specialists who would be assigned to individual patients.
- Phase 2: Developing a system for the routine collection of biospecimens and clinical data.
- Phase 3: Integrating genomic testing as part of standard care for accurate diagnostics and targeted treatments.
If the proposed pilot can be funded, it will showcase the benefits of introducing neuro-oncology nurse specialists, as well as establishing systems to advance brain cancer research as an integral part of patient care. Ultimately, we aim to take a package to Government, using these studies, and lobby for the national roll out of neuro-oncology nurse specialists across Australia.
This model provides an opportunity to give brain cancer patients the level of care they need and deserve, while at the same time providing clinicians and researchers with the tools they need to advance research and find new treatments. There are challenges involved, but we have great researchers, clinicians and nurses here in Australia and a world-class health system, so there is also huge potential.