STRONG-AYA

In any healthcare system it is essential that patients have access to high-quality care and to deliver tangible improvements in outcomes encompassing survival, health-related quality of life (HRQoL), the ability to attend school or work, get and raise children and actively participate in society. This is particularly important for adolescents and young adults (AYA) with cancer, defined as 15 to 39 years at initial cancer diagnosis. Their annual cancer incidence is 42.2/100.000, with 156.431 cases in Europe and 1.231.007 cases worldwide reported in 2018 (together 6.8% of all cancers). Advances in cancer treatment have led to increased survival rates and in AYA’s even over 80% will survive long-term (>5 years) [4], However, despite the relatively favourable cancer prognosis, AYA cancer patients are at risk of treatment related development of medical effects (e.g., cardiovascular disease or second malignancies), infertility or psychosocial effects (e.g., difficulty in romantic relationships, financial toxicity due to unemployment without a prior career job), and have an increased risk of late mortality. AYAs with cancer are distinct from the paediatric (<15 years) and the older adult (>40 years) cancer populations.

The unique characteristics require access to oncology services which provide expert cancer care and consider AYAs’ age-specific and complex psychosocial and physical needs regarding (1) physical changes, development of selfimage, identity, relationships, sexuality and independence; (2) age-appropriate information and communication, shared decision-making, compliance and treatment adherence; (3) privacy and peer-support; (4) peculiar behaviours of this age and risk-taking (including alcohol/substance abuse). 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.

We have united a network of professionals (HCPs and scientists) and patients, some of which are already collaborating within ENTYAC and the ESMO/SIOPE AYA WG, who collectively expressed their wish to join forces to work on the specific challenges of AYA with cancer. The time is right to make a significant investment to sustainably align research and healthcare to inform individual decision-making and healthcare policy. By creating five national ecosystems and an overall European AYA healthcare research ecosystem, concentrating on the dynamic generation and use of outcomes data by all important actors within healthcare and research, we will work towards the most effective, affordable and sustainable value-based care for AYA with cancer to maximize their health outcomes.

This is a grant from the European Commission.