During the EU-funded project “EU-CAYAS-NET”, a “European Youth Cancer Survivors Network” alongside an interactive virtual platform was develeoped. The network fostered social networking, peer-support, knowledge-exchange, and aimed at improving:

• the quality of life of survivors (including mental health, education & career support, follow-up care and transition)
• the care for adolescents and young adults (AYA) with cancer
• Equality, Diversity and Inclusion (EDI) along the whole treatment and survivorship trajectory.

The activities of the project included peer visits, meetings, training, virtual coworking, social media campaigns, webinars, policy recommendations and national and international events.

PanCare led Task 3.5 on late effects and long-term follow-up care. Within this task, PanCare conducted a survey to identify best practices and lack of long-term follow up-care. Focus groups were prepared and organized for CAYA cancer survivors, advocates and HCPs to identify needs, preferences
and barriers for the implementation of optimal LTFU care. Furthermore, peer visits were organised to get insight into models of LTFU care in practice in the Netherlands (PMC), Spain (FJD), (SIOP Europe) and Austria (MUV).

Based on these activities, key recommendations for the implementation of LTFU care were described in a roadmap. Previous PanCare projects (PanCareSurFup, PanCareLIFE, PanCareFollowUp, PanCareSurPass etc.) and activities were connected to the platform that is being developed withing EU-CAYAS-NET including PLAIN language brochures on specific late effects and guidelines for LTFU care.

Duration: Sept 2022 – June 2025

Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.