Vision and Objectives

The unique characteristics of AYAs living with cancer require access to oncology services which provide expert cancer care and consider AYAs’ age-specific and complex psychosocial and physical needs. However, in many parts of the world, AYAs with cancer face inequities of care as they are poorly served by the traditional dichotomy of the integrated paediatric (“patient/family-centered”) care services versus dispersed (“disease-centered”) adult oncology services. Up to half of AYA with cancer report unmet informational and service needs, impacting their direct (survival rates) and indirect (long term effects and mental health) recovery to participate in the society.

STRONG AYA seeks set up a value-based healthcare research ecosystem, with AYA patient involvement at its core, in order to develop data-driven, interactive policy and visualization tools that bring, in co-creation with all stakeholders including patients, novel insights into AYA healthcare. At its core, STRONG AYA will

  • Equip AYAs with cancer with the data to better optimise their healthcare, support shared and personalised decision-making between AYA and health care providers.
  • Enable AYA healthcare quality monitoring by monitoring access to AYA nurse specialists, fertility consultants, and social workers for discussion about work etc.
  • Establish benchmarking between the different countries on these key performance indicators.
  • Enhance AYA research data sharing.
  • Provide real-world evidence to all important AYA oncology decision-makers.
  • Share insights with policy-makers to address and reduce inequalities across the entire disease pathway of different cancers in AYAs in different regions in Europe.

Our objectives are

  • The development of a Core Outcome Set (COS) for AYAs with cancer.
  • The implementation of the COS in five national healthcare systems across Europe, with participating centers in France, Italy, the Netherlands, Poland and the United Kingdom, and the establishment of national infrastructures for outcome data management and clinical decision-making and a pan-European ecosystem that also welcomes future European countries.
  • The dissemination of outcomes and facilitation of interactions between national and pan-European stakeholders to develop data-driven analysis tools to process and present relevant outcomes, establish feedback loops for AYA cancer patients and the healthcare systems, and improve the reporting and assessment of outputs towards policy-makers.

STRONG AYA will work towards the most effective, affordable and sustainable value-based care for AYA with cancer to maximize their health outcomes, and ambitiously set a standard of excellence in AYA oncological healthcare across Europe.