STRONG-AYA: THE STRONG-AYA INITIATIVE: IMPROVING THE FUTURE OF YOUNG ADULTS WITH CANCER

STRONG-AYA is a new, interdisciplinary, multi-stakeholder European network to improve healthcare services, research and outcomes for individuals aged 15-39 years at cancer diagnosis (Adolescents and Young Adults; ‘AYA’). AYA with cancer form a unique group; they face age-specific issues (e.g. infertility, unemployment, financial problems) and decreased quality of life due to cancer and its treatment. Unlike dedicated healthcare and research for paediatric cancer patients, AYA-specific healthcare services are scarce and vary across Europe. AYA, who are at the core of European society and economy, need access to evidence-based age-adjusted high-quality healthcare. AYA care and research will benefit from collection and utilisation of patient-centred data integrated with clinical and health service data and wide collaboration among all stakeholders: patients, healthcare professionals, researchers, and healthcare policymakers. Our consortium (clinical and scientific leaders in AYA-care, data scientists and cancer registries, European Cancer Organisation and Youth Cancer Europe patient and policy advocates, and expert research ethical and regulatory international research organisations such as EORTC) will build with previous and other ongoing initiatives and EU grants.

Within STRONG-AYA we will set up a value-based healthcare research ecosystem to develop data-driven, interactive policy and visualization tools, in co-creation with all stakeholders (including patients) that bring novel insights into AYA healthcare.

The project objectives, include: 1) Development of a Core Outcome Set (COS) for AYAs with cancer; 2) Implementation of the COS in 5 national healthcare systems (FR, IT, NL, UK, PL) with national infrastructures for outcome data utilisation in clinical decision-making, research and health policy. Then a pan-European ecosystem will utilise this international data and welcome future European countries; 3) Disseminate outcomes and facilitate interactions between national and pan-European stakeholders to develop analysis tools that present relevant outcomes to all stakeholders, create feedback loops for AYA cancer patients, healthcare systems, and policy-makers.