Survivorship Consultation Report
Revealing the critical gaps in survivorship care and charting a path forward
Surviving cancer is only the beginning
80% of childhood cancer survivors experience long-term effects from their treatment.
The need for comprehensive survivorship research and care has never been more urgent.
Report reveals critical gaps
Childhood and adolescent cancer survivors and their families face a hidden crisis after treatment ends - one marked by fragmented health care, financial hardship, disrupted education, and lasting psychological impacts.
Children's Cancer CoLab’s report, Beyond the cliff: patient and family voices on childhood cancer survivorship, 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.
Five priority areas and 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. Health care 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.
Survival is not enough
“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."
A/Prof Michelle Yong - Children’s Cancer CoLab’s Board Deputy Chair and the parent of two childhood cancer survivors.
Read the full consultation report
Beyond the cliff: patient and family voices on childhood cancer survivorship
Learn more about our survivorship initiatives
Ways you can make an impact
Your support drives critical research that changes 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 model unites top researchers across institutions, breaking traditional barriers to accelerate discoveries from laboratory to clinic, creating real impact for young cancer patients and their families.
