Caught in the Middle: Identifying Gaps for Adolescents and Young Adults (AYAs) with Cancer

26 June 2024

Each year, 150,000 individuals belonging to the Adolescents and Young Adults (AYA) age range of 15 to 39 years old are diagnosed with cancer. They represent a unique group, facing cancer-related struggles such as pain, anxiety, or infertility, which interplay with age-related difficulties such as unemployment, or a lack of financial stability.

These factors consequently contribute to making AYA cancer patients a highly vulnerable group, resulting in a decreased mental health and quality of life. In spite of these known challenges, AYA cancer may face forms of unawareness, lack of education and policy attention, due to ‘in-betweenness’ of this category between the paediatric and the adult cancer patient population, resulting in insufficient designated medical facilities and oncology services.

The STRONG-AYA Project, funded by the Horizon Europe and Innovate UK programmes, aims at creating a new, interdisciplinary, multi-stakeholder European network seeking to improve healthcare services, research and outcomes for AYAs. It seeks to achieve and deliver an interactive and safe data infrastructure ecosystem to gather anonymous data from AYA cancer patients that can be used as a basis for research and evidence-based policies. The STRONG-AYA Consortium held its first Stakeholder Forum ‘Caught in the Middle: Identifying Gaps for Adolescents and Young Adults with Cancer’ on 27 September 2023, bringing together 70 participants. The aim was to discuss the exclusive achievements of the project, provide a space for relevant stakeholders to provide feedback on the project’s ongoing activities and engage with the AYA Community on the project, beyond its current development and duration.

This event report consequently focuses on the key messages and recommendations emanating from the Forum. With the 2024 European Parliamentary elections in mind, the addressing of the needs of AYA cancer patients is a topical issue, and the momentum is to be seized.

Read the full report.