Patient survivorship

Survivors of childhood cancer may encounter many challenges post-treatment. In Victoria, survivorship follow-up care is provided via the Victorian Paediatric Integrated Cancer Service (PICS). This includes a long-term follow-up program (LTFP) and facilitating transition to adult healthcare services.

Continuity of patient care from active treatment through to survivorship is often hampered due to a lack of linkages in data related to patients’ cancer diagnoses and treatments. PICS currently manually curates a patient registry of key patient data points, with a focus on late effects of treatment.

This new program within the VPCC will improve the patient registry for which we can link clinically annotated minimal datasets to other Australian registries, as well as to The Royal Children’s Hospital and Monash Children’s Hospital affiliated Tissue Banks. This improved PICS LTFP digital platform will facilitate all current and future research through biomedical/translational, clinical, health services and population health research pillars and enable linkage with other digital data platforms including the electronic medical record at all participating centres that treat children with cancer.

Specifically, we will:
1. Expand registrations to include all children and adolescents diagnosed with or treated for paediatric cancer in Victoria.
2. Expand the dataset to improve data integrity, consistency, and clarity.
3. Support real-time connectivity to existing data sources, reducing duplication and supporting sustainability.
4. Integrate dynamic configuration for future-proofing, enabling addition of novel therapies andclinical classifications.
5. Build in mapping and clinical annotations to facilitate linkage and comparison to other nationaland international childhood cancer registries.
6. Establish processes to routinely link to and analyse with local datasets.
7. Provide essential data for research studies, quality monitoring and service improvement initiatives.
8. Incorporate robust tools to enable seamless knowledge transfer of patient-level data to adult survivorship services