EU-CAYAS-NET and OACCUs: two EU4Health projects that are transforming childhood cancer care

 

15 February marks the International Childhood Cancer Day. According to Childhood Cancer International Europe, 35 000 children and adolescents are diagnosed with cancer each year. Fortunately, the survival rates across Europe have significantly improved, with currently more than 500 000 children able to lead healthy, cancer-free lives.    

On International Childhood Cancer Day, HaDEA  spoke with Carina Schneider, managing director of Childhood Cancer International Europe, and Dr. Svenja Stöven, project leader at European CBRNE Center and associate professor in Molecular Biology at Umeå University in Sweden, to learn more about the EU4Health projects EU-CAYAS-NET and OACCUs and their role in transforming childhood cancer care.  

Carine Schneider is the coordinator of the EU-CAYAS-NET project, which focuses on improving the lives of youth cancer survivors through the development of an interactive, virtual platform. Dr. Stöven is the coordinator of the OACCUs – Outdoor Against Cancer Connects Us – project, which aims to enable young cancer survivors to live a healthy and forward-looking life.  

1.  Could you tell us more about your projects?  

C.S. The EU-CAYAS-NET project is led by patient advocates under one of the flagship initiatives of Europe´s Beating Cancer Plan to build a European Network of Youth Cancer Survivors and to create a Knowledge Centre and interactive Platform for social networking. The project strives to improve three themes relevant to youth cancer survivors:  

1. Quality of life of survivors – including mental health, education & career support, follow-up care, and transition from paediatric to adult health care; 
2. Care for adolescents and young adults (AYA) with cancer; 
3. Equality, Diversity, and Inclusion (EDI) along the whole treatment and survivorship trajectory 

S.S. The OACCUs project addresses young cancer survivors and their social environment, including organisations and professionals that work with them. OACCUs is based on four key pillars of healthy living:  

1. Physical activity and outdoor sports; 
2. Balanced nutrition; 
3. Sustainability and nature; 
4. Mental and physical well-being. 

The OACCUs framework aims to establish a supportive ecosystem that not only aids in recovery, but also empowers individuals to improve their quality of life. This tailored approach responds to the challenges faced by children and young adults affected by cancer, addressing both their health concerns and long-term well-being. 

 2. Have you encountered any significant challenges in implementing the project?  

C.S. In EU-CAYAS-NET, under the Quality of Life theme mentioned above, it's been challenging to integrate what we have learned in each of the sub-themes explored- such as mental health and psychosocial care, education and career support, transition from paediatric to adult care, and long-term follow-up care. Our enthusiastic, collaborative Quality of Life team, composed of survivors and healthcare professionals, has done a great job in overcoming the obstacles together! 
The project also serves as an effective means of raising awareness about the often-overlooked aspects of the daily realities that many young people with cancer in Europe face today. 

S.S. One significant challenge faced in implementing the OACCUs project revolves around the difficulty in approaching young cancer survivors. These individuals are not necessarily members of cancer associations; they may find it challenging to identify with such groups. Moreover, they are at a particularly sensitive phase in their lives, where issues of self-esteem, privacy, and vulnerability are paramount. 

One of the major project activities was a survey on the needs for support and attitudes of young cancer survivors regarding a healthy lifestyle. Recruiting the target group to answer the questionnaire was a considerable challenge for project partners, mainly for two reasons: a) reluctance to speak about one’s problems and by that revive unpleasant memories and experiences, and b) survey fatigue as the respondents appear to be the target group for many research projects.  

3.   How have your projects contributed to improving the life of young cancer survivors?  

C.S. Our project EU-CAYAS-NET has contributed to building a European community of young cancer survivors through a unique combination of online and in-person approaches. Online, our platform provides a wide range of high-quality resources and a community open to all, along with links to relevant events, project webinars and project videos. In-person, the project has hosted project ambassadors events as well as regional survivors events, and has conducted peer visits to clinics across Europe. Within our community, survivors can find a safe space to share, learn and grow, improving their quality of life by learning more from our resources and connecting with their peers across Europe. 

S.S. The project works towards establishing a pan-European network of young cancer survivors and members of their social environment. The OACCUs Network Toolbox will offer evidence-based health-promoting information, inspiration and motivation. Peer-support and sharing of experiences, facilitated by a community platform, are expected to lead to behavioural change, not only on the side of young cancer survivors, their families and friends but also among professionals working with them.  

4. How important is the support of EU funding for your projects? What are the expected future outcomes of your projects? 

C.S. EU funding was essential for establishing our network, which represents 38 European countries across our Associated Partners and the networks of beneficiaries CCI Europe, Youth Cancer Europe, PanCare and SIOP Europe. The project EU-CAYAS-NET includes planning for sustainability of the network and the project's outputs, including the platform and community, which we aim to maintain after the project ends, hopefully with additional EU funding. Other outputs will include position papers, recommendations, guidelines and policy guidance, which will be promoted at both national and European level. 

S.S. Without EU funding the project activities would not be possible, at least not on this large scale and not in that many countries in a coordinated way; the EU funding can be considered a kick-starter for a pan-European  movement to improve quality of life. The value of carrying out such a project on European level lies in the exchange of best practice and experiences. This applies both to the collaboration within the consortium and to the project outcomes provided to the stakeholders. The OACCUs Network facilitated by a community IT-platform remains active after the end of the project and is expected to expand further.  

^{These projects are co-funded by the European Union. The expressed views and opinions expressed are those of the authors 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.} 

Background information 

EU4Health is the fourth and largest of the EU health programmes. The programme provides funding to national authorities, health organisations and other bodies through grants and public procurement, contributing to a healthier Europe. 

HaDEA manages the vast majority of the total EU4Health budget and implements the programme by managing calls for proposals and tenders from 2021 to 2027. 

Relevant links 

EU-CAYAS-NET project 

OACCUS project 

Europe's Beating Cancer Plan 

#GetScreenedEU campaign 

#UnitedInProtection: a focus on HPV vaccination