Consultation report reveals critical gaps in childhood cancer survivorship care
Access the CoLab Survivorship Consultation Report on the Survivorship Initiatives webpage here
Childhood and adolescent cancer survivors and their families face a hidden crisis after treatment ends - one marked by fragmented healthcare, financial hardship, disrupted education, and lasting psychological impacts. With 80% of childhood cancer survivors experiencing long-term effects from their treatment, the need for comprehensive survivorship care has never been more urgent.
A new report from Children's Cancer CoLab reveals the critical gaps in long-term support and charts a path forward based on the voices of those who know these challenges best.
The report captures individual 207 insights from consultations with 35 survivors, families, caregivers, clinicians, researchers, advocates and health service providers through individual interviews, Patient and Family Advisory Committee discussions, and a dedicated Survivorship Roundtable.
The insights were consolidated into five priority areas, each outlining key challenges and opportunities throughout the lifespan, including in the acute treatment phase, end-of-treatment phase, long-term follow-up and ongoing survivorship.
Children’s Cancer CoLab’s Board Deputy Chair and the parent of two childhood cancer survivors, A/Prof Michelle Yong, said survivorship was not simply the absence of disease.
“Survivorship is about thriving in all aspects of life. This consultation report highlights that we must do more to support childhood cancer survivors and their families as they navigate the complex journey beyond treatment. Their voices have illuminated critical gaps in care and pointed us toward meaningful solutions."
Childhood cancer survivor, Maryjo Saliba, explained that it’s like falling off a cliff when treatment ends.
“Once you transfer out of the paediatric oncology setting, the scaffolding that once supported your life falls away. As a young adult survivor, you are left to navigate complicated healthcare and support systems on your own – it can be daunting and overwhelming at times.”
Five priority areas identified alongside opportunities
The consultation report focuses on five critical areas for improving survivorship outcomes, alongside opportunities for each area:
1. Family counselling and support needs
Opportunity: Develop holistic, flexible, and responsive psychosocial and mental health support.
2. Financial toxicities
Opportunity: Provide early, continuous, practical financial guidance.
3. Educational challenges, social connection and reintegration
Opportunity: Enhance services and improve coordination across social, educational and vocational assistance.
4. Healthcare fragmentation
Opportunity: Provide personalised plans and user-friendly information, supported by digital tools.
5. Barriers to access and capability
Opportunity: Deliver specialised training for primary care and community health providers.
The Children’s Cancer CoLab report emphasises that survivors, families and caregivers must always remain at the centre of future research, policy development, and service design.
Next steps
Children’s Cancer CoLab’s Survivorship Reference Group is currently developing a position statement and roadmap to guide CoLab’s funding strategies, advocacy, and activities, ensuring they remain aligned with the priorities voiced by survivors, families, and caregivers.
Access the consultation report
Read the full consultation report - Beyond the cliff: patient and family voices on childhood cancer survivorship - on our Survivorship Insitiatives webpage.
Share our stories
All stories published by Children’s Cancer CoLab can be shared under a Creative Commons Attribution-NonCommercial 4.0 International license, which means you're welcome to share and adapt our content with proper attribution using the details below.
Sign up to our newsletter
Stay connected with Children’s Cancer CoLab.
More ways you can make an impact
Your support drives critical research and innovation that will change lives. By supporting Children's Cancer CoLab, you become part of a community working to ensure every young patient with cancer survives and thrives. Our approach unites top researchers across disciplines and institutions, breaking traditional barriers to accelerate discoveries from the lab to clinic, creating real impact for young cancer patients and their families.
