(Vienna, 12-04-2023) Children, adolescents and young adults who have or had cancer are supported by the international project EU-CAYAS-NET (sub-project of the EU4Health programme). MedUni Vienna is involved with its Department of Pediatrics and Adolescent Medicine.
The project, which is co-funded by the EU, runs from September 2022 to August 2024 and is aimed at patients who developed cancer as children, adolescents or young adults, cancer survivors and carers. In technical jargon, this is referred to as CAYA ("Children, Adolescents and Young Adults") Cancer Survivors.
EU-CAYAS-NET is a project led by patient representatives on cancer. The aim is to establish a "European Network for Young Survivors of Cancer" and to create an information centre and interactive platform for social exchange.
Leading organisations from 18 countries working in this field are providing resources for young patients, survivors and their carers, developing new European guidelines and supporting survivors in advocating for their rights and needs. EU-CAYAS-NET promotes social networking, peer support and knowledge sharing and endeavours to improve the following areas:
Survivors' quality of life - including mental health, education and vocational support, follow-up care and transition from paediatric to adult medicine;
Care for adolescents and young adults with cancer;
Diversity, Equity and Inclusion (DEI) throughout the treatment phase and beyond.
The beatcancer.eu networking platform is an interactive platform where survivors can get answers to their questions, share experiences with others affected by cancer and, last but not least, have fun. In addition to patients, survivors and their caregivers, the platform addresses everyone involved in childhood and adolescent cancer, including stakeholders from health care, research and politics.
In addition to the leading organisations from 18 countries, 10 beneficiaries are also working together, one of which is the Department of Pediatrics and Adolescent Medicine at MedUni Vienna. One special feature of the project is its management by the patient organisations, which means that there is close cooperation with health professionals from all disciplines (medicine, psychology, social work, etc.). Former patients are also involved as staff members in the project management and implementation, contributing their personal experiences for a relevant added value.
A team of ten people at MedUni Vienna's Department of Pediatrics and Adolescent Medicine is involved in different areas of the project, focusing on mental health and psychosocial care. The team consists of health professionals from the sectors of clinical psychology, clinical social work, anthropology and medicine, as well as patient experts, who contribute their own experience of illness in addition to their specialist expertise. The activities include the review of scientific literature and topic-specific materials, the implementation and evaluation of surveys and focus groups, the creation of videos and webinars as well as the joint development of new standards and concepts, always in active exchange with the project network. Furthermore, the emphasis is also on organising and participating in peer visits in Utrecht, Barcelona and Vienna. 20 survivors from all over Europe visit best-practice models for long-term aftercare and the transition to adult medicine in order to get to know them and to pass their input on throughout Europe. In addition, the team of the Department of Pediatrics and Adolescent Medicine supports the development of the project platform and is co-responsible for the external communication of important project-related information.
Up-to-date information can be found continuously on the project's social media channels:
https://www.linkedin.com/showcase/youthcancersurvivors/
https://www.facebook.com/youthcancersurvivors
https://www.instagram.com/youthcancersurvivors/
Contact: Ulrike Leiss, eu-cayas-net@meduniwien.ac.at
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.