International Childhood Cancer Day: EU4Health projects addressing the different impacts of cancer on young patients and survivors

At the occasion of International Childhood Cancer Day, attention is drawn to the estimated 14 000 children and adolescents who are diagnosed with cancer every year in Europe. Cancer treatments have improved, and most childhood cancer patients in Europe become long-term survivors, but their journey is still charged with challenges that go beyond physical health. 

The EU4Health programme is funding a number of projects that address different aspects of paediatric oncology – not only tackling the illness itself but also focusing on the quality of life and emotional wellbeing of affected children and adolescents. 

EU4Health projects on paediatric cancer 

Concluded a few months ago, the EU-CAYAS-NET project built a European Network of Youth Cancer Survivors and created a knowledge hub and an interactive platform, with the aim of improving the quality of life of young people with a history of cancer.   

The platform, where young cancer survivors can virtually meet and exchange among themselves and with healthcare providers, greatly contributed to social networking, peer-support and knowledge exchange. By the end of the project, the virtual community included over 760 participants from more than 28 countries, as well as 55 young survivors from 29 countries trained and recruited as network ambassadors to represent the network across Europe. 

The interactive platform offers more than 570 relevant resources (articles and interviews) in nine European languages, covering topics identified as important by survivors themselves. Moreover, the platform features 45 videos, 100 books and a cancer dictionary with over 400 terms. EU-CAYAS-NET organised events, webinars, trainings, meetings for young cancer survivors, surveys, focus groups and online workshops. Many recordings of these are available on YouTube.  

The EU-CAYAS-NET project has concluded, but its work will continue thanks to the new YARN project. The European Youth Cancer Network (YARN) builds on the work of the projects EU-CAYAS-NET and OACCUs (Outdoor Against Cancer Connects Us) to expand the EU Network of Young People Affected by Cancer. YARN focuses on peer support, social networking and digital tools to improve access to information, particularly for those facing relapse, metastatic cancer and the side effects of treatment. 

The project will assess the role of social connections in the emotional wellbeing of young people with cancer. Through focus groups, peer visits, training programmes, webinars and workshops, YARN will implement psychosocial and mental health care standards and offer education and career support. It will also focus on healthy lifestyles and introduce exercise programmes to improve wellbeing.  

Another EU4Health initiative, the Joint Action HOPE4Kids (Holistic Oncological Palliative care 4 Europe's Kids), aims to reduce inequalities across Europe by improving the quality and access to paediatric palliative care (PPC). Specialised PPC is unequally delivered across the EU, which results in the poor management of psychosocial and physical symptoms in many children with cancer . HOPE4Kids will facilitate knowledge-sharing and develop guidelines to improve the development of high-quality PPC in all European countries. 

IMPACT-EU (Improve Psychosocial care and social support for children/adolescents with cancer and their families to improve quality of life for all) is working to establish European standards for psychosocial care in paediatric oncology, ensuring comprehensive support throughout the treatment journey, including the transition to adult care. The project will map current psychosocial services across Europe and develop evidence-based guidelines, based on quantitative and qualitative studies. To address training gaps, the project will offer training to people performing different roles in healthcare teams so they can offer holistic, patient-centred care. The training should also help foster collaboration across regions. Moreover, the project will pilot psychosocial screening and therapeutic tools in five centres across different European settings.    

ON-COME (paediatric Oncology Network and Communication on the Mind-body-Environment relationship) aims to transform the psychosocial and nutritional care provided to paediatric cancer patients, focusing on children, adolescents and young adults (0-24 years). The project will develop a system that standardises best practices in psychosocial and nutritional care, ensures equitable access to high-quality services and integrates digital innovations for more personalised patient care. ON-COME will provide specialised training for healthcare professionals to equip them with the skills necessary for holistic, patient-centered care. The project will then pilot these services in different clinical settings in the EU.  

The projects ON-COME and IMPACT-EU have established synergies and are working together to achieve common goals. 

Under the EU-USA collaboration on cancer, a technical working group has been established focusing on paediatric cancer. As a result, the project PARTNER4VRT (Enhanced International Research on Very Rare Cancers of Paediatric & Adolescent and Young Adult Age) has just started, aiming at establishing a pilot observational study to increase the amount of data from patients for meaningful analyses. The project will develop harmonised EU–US definitions and common data elements for rare paediatric and AYA cancers, as well as a dataset to enable the identification of biomarkers for early detection, diagnosis, prognosis, risk classification and treatment response. The project will also create a scalable framework for expanding collaboration to additional rare paediatric tumours and strengthen EU–US research partnerships. 

CHIP-AML22 aims to improve the diagnosis and treatment of paediatric acute myeloid leukemia (AML), a rare but aggressive blood cancer. Currently, not all children in Europe have access to the same level of diagnostic precision or modern treatments. The project supports the clinical implementation of next-generation sequencing, advanced  minimal residual disease  monitoring and targeted therapies, which are essential for personalised medicine. The infrastructure and protocols developed through CHIP-AML22 can serve as a model for other rare diseases and cancer types. Its findings can provide valuable insights for wider groups of patients, including those with adult AML. Since its launch in late 2022, the project has involved 100 paediatric AML patients, expanded trial coverage across 12 EU countries and established a well-functioning, evolving patient registry. 

Cancer projects addressing childhood and AYA cancers, among others 

In addition to the projects mentioned above, several other EU4Health projects and Joint Actions address cancer in children and young people as part of their wider work and activities in the field of cancer prevention, diagnosis and treatment:  

• INTERACT-EUROPE 100 continues the work of the previous project INTERACT-EUROPE by implementing its Inter-Specialty Cancer Training curriculum. The project aims to develop a patient-centric approach to quality cancer care across Europe through the promotion of multidisciplinary and multi-professional teams working across Europe, and it includes a module focused on paediatric oncology.   
• JANE2 builds on the results of the Joint Action JANE and will create the seven Networks of Expertise on Cancer for which JANE set the foundations.  One of the seven networks is dedicated to adolescents and young adults with cancer. The Networks will provide services to the European cancer community such as clinical practice guidelines and general recommendations, educational tools for medical professionals and patients, and raise public awareness.
• The MELODIC project aims to promote mental health and wellbeing of young adults with cancer and their family/caregivers by improving screening and efficient and person-centered management of mental health needs within the two years after the cancer diagnosis.
• ALTHEA will develop a web-based platform to facilitate the screening of mental health issues among cancer patients and their families, including paediatric and adolescent patients.
• DESIPOC is developing a comprehensive platform that includes a knowledge hub, virtual observatory and training system to improve mental health screening, communication and skills for patients of all ages, families and carers.  

Under the EU4Health programme, HaDEA has also signed a contract for a study on the provision of care for Adolescents and Young Adults (AYA) cancer patients. So far, the contractor has conducted research on the provision of healthcare and services for AYA cancer patients and survivors in Europe, establishing a comprehensive evidence base for quality care in AYA cancer treatment and survivorship identifying good practices across countries. The project is currently conducting stakeholder consultations for the validation of its findings.

Relevant links 

ECIS - European Cancer Information System – Childhood data 

Factsheet: Europe's Beating Cancer Plan - Making a difference  

Background 

EU4Health is the fourth and largest of the EU health programmes. The EU4Health programme goes beyond an ambitious response to the COVID-19 crisis to address the resilience of European healthcare systems. The programme provides funding to national authorities, health organisations and other bodies through grants and public procurement, contributing to a healthier Europe.