Key Facts:
- Interim findings from a national study presented at Parliament House reveal Australia lacks a consistent, evidence-based framework for supporting childhood and adolescent cancer survivors through the lifelong effects of cancer treatment.
- The study found significant variation between states and territories in eligibility criteria, models of care, transition pathways, and access to multidisciplinary support, with particular gaps for survivors in regional and remote areas.
- Researchers previously identified several survivorship care models including specialist-led, multidisciplinary, shared-care, and primary-care-led approaches, but concluded there is insufficient evidence to favour any one model before it is tested and scaled within Australia's health system.
- Children's Cancer CoLab is calling for a nationally coordinated research effort to ensure survivors' care is not determined by their postcode, and is seeking to work with government and sector partners to develop a sustainable care pathway blueprint.
- Survivor Shiloh Middlemiss, who was treated for leukaemia at 15 and now lives with multiple chronic conditions including a secondary cancer, highlights the lifelong nature of survivorship, stating: Childhood cancer survivorship is not something you leave behind when treatment ends.
Calls for more Australian research to determine which models of long-term survivorship care work and can be scaled
Interim findings from a national study found Australia lacks a consistent, evidence-based approach to supporting children and adolescents through the lifelong effects of cancer and its treatment.
Children's Cancer CoLab presented interim findings from the National Childhood and Adolescent Cancer Survivorship Landscape Study at Parliament House on 13 October, indicating that, while Australia has made significant progress in childhood cancer survival, what happens after treatment can vary substantially depending on where a survivor lives and the services available to them.
These findings directly support priorities in Cancer Australia's Childhood, Adolescent and Young Adult Cancer Roadmap, released in May, which specifically recognises survivorship and supportive care research as an area of unmet need.
Drawing on expert consultations and 31 survey responses covering 59 services and programs nationwide, the study's interim findings show that Australia has:
- A lack of a national survivorship framework or agreed minimum standards for long-term, risk-based follow-up.
- Substantial variation between jurisdictions and services in eligibility, models of care, transition pathways and access to multidisciplinary support.
- Gaps in access for survivors in regional and remote areas and other underserved communities.
The study found important work is already underway across health services, research institutions and community organisations. However, there is currently no comprehensive national framework for childhood cancer survivorship and insufficient evidence to determine which models of care should be adopted and scaled across Australia.
Professor Natalie Bradford, Professor of Childhood Cancer and Palliative Care at Queensland University of Technology and Cancer Council Queensland, said international guidelines provide an important foundation for survivorship care.
"These guidelines help us understand who is at risk and what health effects should be monitored. But guidance does not, by itself, tell us how best to organise and sustain care within Australia's health system," Professor Bradford said.
"In research conducted by my own group, we identified specialist-led, multidisciplinary, shared-care and primary-care-led survivorship approaches, but there is not yet sufficient evidence to favour one model over another.
"Before models are scaled, they need to be tested in real-world Australian settings and evaluated against outcomes that matter to childhood cancer survivors, families and health systems."
Children's Cancer CoLab CEO Dr Udani Reets said the answer was not simply to establish another service or import an overseas model.
"Australia already has dedicated clinicians, services and researchers. The challenge is to connect that expertise and generate the evidence needed to make care consistent, equitable and sustainable," Dr Reets said.
"We need a nationally coordinated research effort to understand what works, what can scale and how we ensure a survivor's care is not determined by their postcode, age or ability to navigate a complex health system."
Children's Cancer CoLab is now seeking to work with Government and sector partners on a coordinated national research approach to test scalable models of survivorship care, measure long-term outcomes, and translate the findings into a sustainable care pathway blueprint.
The 13 October Parliament House event brought together parliamentarians, survivors, families, clinicians, researchers and philanthropic organisations to consider the early findings and the next steps towards nationally coordinated survivorship research.
Alongside mapping services, the broader study being delivered by Biointelect, will quantify the lifetime economic burden of childhood cancer survivorship, with final findings due for release in early 2027.
"It doesn't end": Shiloh's story
When Shiloh Middlemiss was diagnosed with acute myeloid leukaemia at 15, she underwent six months of intensive chemotherapy followed by a stem cell transplant and total body irradiation.
The treatment saved her life. More than two decades later, however, Shiloh is still living with its consequences.
Now approaching 40, Shiloh lives with diabetes, thyroid dysfunction, chronic kidney disease, liver dysfunction and infertility. She has also developed a secondary cancer and requires ongoing appointments, tests, medication and care from multiple specialists.
She describes survivorship as "like having a rock in your shoe" - always present, even when others cannot see it.
The psychological impact also emerged long after treatment.
"It wasn't until I probably hit my late twenties that the PTSD hit," Shiloh said. "I thought we'd got through this."
Shiloh still relies heavily on her paediatric survivorship team because of its understanding of the complex and interconnected late effects of childhood cancer treatment.
While she values her local healthcare providers, she often needs to explain uncommon treatment-related risks to clinicians and coordinate advice across different parts of the health system. Recommended surveillance and specialist appointments can also carry out-of-pocket costs.
"Childhood cancer survivorship is not something you leave behind when treatment ends," Shiloh said.
"I am managing multiple conditions, specialists and ongoing tests because of treatment I received as a teenager. Survivors need care that connects the whole picture, rather than leaving us to navigate each part of the system alone."
When asked what she most wants policymakers and the community to understand about life after childhood cancer, Shiloh's message is simple:
"It doesn't end."
