New Report Outlines How Europe Can Address Needs of Young Cancer Patients

A new report, published as part of the EU-funded STRONG-AYA project, highlights a series of lessons and recommendations to provide a brighter future for adolescents and young adults (AYAs) with cancer. Entitled ‘Caught in the Middle’, the report is the result of an extensive stakeholder forum.

‘Addressing the needs of cancer patients aged 15 to 39 years old is a pressing issue,’ said Winette van der Graaf, president of the European Organisation for Research and Treatment of Cancer and head of medical oncology at the Netherlands Cancer Institute.

‘This demographic faces age-specific issues such as infertility, unemployment, and financial problems due to cancer and its treatment. This new report highlights the key areas where Europe must do better and will inform STRONG-AYA’s multi-stakeholder network, launched through our EU-funded project.’  

The STRONG-AYA stakeholder forum in September of 2023, brought together 70 participants to discuss the project and provide feedback on its activities.  Groups contributing to the forum included the European Network for Teenagers and Young Adults with Cancer, and the EU Network of Youth Cancer Survivors.

One participant, a fifteen-year-old patient with leukemia, said: ‘Projects such as STRONG-AYA are important as it involves patients and survivors from an early stage, having a real impact in shaping the path forward. We are not mascots; we are not tokens: we are able to impact how the project is shaped from the outset’

About STRONG-AYA

The STRONG-AYA project is funded by Horizon Europe and Innovate UK. It runs from 2022 to 2027 and involves 14 consortium members across seven European countries. It seeks to create a new, interdisciplinary, multi-stakeholder network to improve healthcare services, research, and outcomes for AYAs. To do so, the project is:

• developing a Core Outcome Set (COS) for AYAs with cancer, including most relevant measures among clinical, patient-reported and cancer registry outcomes, through an international consensus process involving patients, their carers and representatives, and healthcare professionals;
• implementing the COS in five national healthcare systems across Europe and the establishment of national infrastructures for outcome data management and clinical decision-making; and
• disseminating outcomes and facilitating interaction between local, regional national and pan-European stakeholders to develop data-driven analysis tools to process and present relevant outcomes.

Visit the website to learn more: strongaya.eu