Background: Worldwide attempts have been made to improve the outcomes for adolescents and young adults (AYA) diagnosed with cancer by developing dedicated programs and services. These services are imperative to optimise the health and well-being of the ever increasing numbers of AYA cancer survivors. In Australia, Commonwealth funds established a National Youth Cancer Network Program in 2009. CanTeen Australia coordinates the Youth Cancer Service (YCS) program and five jurisdictional lead sites are now established in Melbourne, Brisbane, Adelaide, Sydney and Perth. Queensland’s vast state and widely dispersed population presents unique challenges to providing coordinated access for youth cancer across this landscape.
Objectives: To describe the development and outcomes of the YCS in Queensland.
Methods: The central team based in Brisbane at the Lady Cilento Children’s Hospital, partners collaboratively with five tertiary cancer centres located across the state. In a consultative partnership model with primary oncology treating teams, the central team collaborates and coordinates activities to facilitate equity in access to AYA specific services. The QYCS receives approximately 150 new AYA referrals each year and provides ongoing support in survivorship to around 350 AYAs annually. Approximately 50% of patients live in the metropolitan area with the remaining from regional and rural locations. Care coordination and workforce development is managed using technology including video-conferencing and web-based data systems. All YCS clinical activities are documented in the data system, enabling patient information to be retrieved in all locations across the state.
Results: Review of service activity during 2015 identified 100% (n=347) of patients were presented at a psychosocial, multi-disciplinary team (MDT) meetings, and 66% of patients at medical or surgical MDTs. Fertility preservation information was provided to 78% of patients, 15% were enrolled on a clinical trial and 40% received additional vocational or educational support.
Conclusions: The re-design of a health service is a challenging and complex task. These outcomes highlight the success in certain aspects of the cross-institutional, collaborative model, and provide a benchmark to measure improvement.