1579P - The Dutch national adolescent and young adult (AYA) cancer care network, a data driven learning healthcare system

Background

Worldwide, AYA care for patients < 25 years is mostly delivered by paediatric oncologists. For the whole range of patients at AYA age (15- 39 years) there is a need for AYA care in adult oncology practices. In 2014, a national AYA network with central coordination, started in the Netherlands (NL) in 7 university medical centres and a cancer centre, with the aim to extend to a nationwide network in the adult oncology environment. This network, co-designed by healthcare professionals (HCPs), patients and caregivers, has evolved towards a data driven learning healthcare system and may be a model for other countries as well.

Methods

From its start, with very limited resources, annual plans were made with lean deliverables, topics on AYA care domains were addressed, (mandatory) teaching modules for HCPs have been developed, and AYA research projects were written with the aim to constantly feed data into the educational and care initiatives of the network.

Results

In ten years, the number of hospitals delivering AYA care has expanded to 75; since 2024 AYA care and network-management is reimbursed by healthcare insurance companies. Research projects have been awarded from the Dutch Cancer Society, Dutch Scientific Council and EU Horizon program. COMPRAYA – a prospective study to collect clinical, biological and psychosocial data, GENAYA - a collection of whole genome sequencing data, INVAYA and CORDAYA –research projects for AYAs with an uncertain or poor prognosis and SURVAYA investigating AYAs 5-20 years after diagnosis, all generate data to constantly improve AYA care. Our awarded EU project STRONG AYA, with federated data collection running in NL, UK, France, Poland and Italy will generate data for individual countries and will ensure benchmarking to improve AYA care at pan-European level. Results of projects are evaluated regularly by master and PhD students with medical, psychosocial and econometry background and postdoctoral researchers, supervised by the core team. Teaching modules are adapted and developed based on the obtained data.

Conclusions

The model of a learning AYA-healthcare system enables collaborative (inter)national data driven initiatives, which has the advantage to improve AYA care at an (inter)national and local level.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

The authors.

Funding

Has not received any funding.

Disclosure

All authors have declared no conflicts of interest.