Patient-centred, evidence-based late effect screening and follow-up care of survivors of adolescent and young adult cancer

ongoing

Survivors of AYA cancer are at risk of treatment-related mortality and morbidity (late effects). The impact on the quality of life (QoL) of AYA cancer survivors and their families, as well as the societal and economic burdens, is significant. However, these impacts can be prevented or reduced by long-term, systematic screening and follow-up (Survivorship Care), which enables the early detection of treatable late effects and timely interventions to preserve health, increase empowerment, manage chronic conditions and improve QoL. PanCare4AYA will improve Survivorship Care for AYA cancer survivors across Europe by developing an international clinical guideline for screening and follow-up. This guideline will be implemented via a novel person-centred screening programme (AYA Cancer Survivor Screen). An implementation study involving 1,000 AYA cancer survivors in 11 European countries (Croatia, Czech Republic, France, Germany, Italy, Lithuania, Netherlands, Norway, Sweden, Switzerland, United Kingdom) will be conducted to test the AYA Cancer Survivor Screen programme, including peer support. The study will look at effectiveness (empowerment, mental health, psychosocial functioning and other QoL-related outcomes), healthcare delivery and screening-related health, experiences of AYA cancer survivors and HCPs with implementing the state-of-the-art screening programme within a range of different healthcare settings, and feasibility. Innovative digital tools will be used in France, Italy, Lithuania and Netherlands. Ensuring the scalability of the AYA Cancer Survivor Screen programme is crucial for achieving enduring, real-world improvements to Survivorship Care for AYA cancer survivors. Therefore, the project includes the assessment of barriers and facilitators for the screening programme and development of freely available materials to support sustainable maintenance and scale-up of AYA Cancer Survivor Screen in additional clinics in future. This action is part of the Cancer Mission cluster of projects on “Quality of life (AYA)”.