Survivorship and Palliative Care in Child and Adolescent Brain Cancer (CASPER)

Children and adolescents with brain cancer, as well as their families, face unparalleled difficulties. Not only is the threat of premature death a possibility, the children and families affected by brain cancer must also face the potential long-term management of difficult symptoms including seizures, cognitive deficits, behavioural changes, pain and fatigue. This research project proposes to:

1. scope the unmet need of patients and families, investigate gaps in survivorship care;
2. investigate economic costs associated with a brain cancer diagnosis in children and adolescents;
3. identify appropriate time points where interventions are required to improve psychosocial, vocational and social outcomes;
4. identify the optimal elements and mode of delivery for supportive care services;
5. co-design, develop, implement and test interventions

This project has the potential to positively impact on the quality of life for patients and their families by reducing distress and increasing access to quality health care.