There are over 500,000 young cancer survivors, aged 14-39 living in Europe. Thanks to advancements in medical treatments, the survival rate stands at an encouraging 85% in developed European countries (Challenges for children and adolescents with cancer in Europe: the SIOP-Europe agenda – PubMed (nih.gov)).

 

Psychosocial outcomes cancer survivors quality of life

However, compared to their peers, survivors of childhood, adolescent and young adulthood (CAYA) cancer have a higher risk of health problems and other issues related to survivorship, so this growing population needs comprehensive long-term follow-up care and social support tailored to the age of diagnosis in order to enjoy optimal quality of life and healthy survivorship.

The objective of EU-CAYAS-NET work package (WP) 3 – Quality of Life is to develop network platform content related to the following healthy survivorship themes:

Mental Health & Psychosocial Care

Literature indicates that mental health and psychosocial challenges are underestimated and often neglected aspects in CAYA cancer survivorship, even though it was shown that a significant proportion of survivors suffer from severe problems such as depression, anxiety, fatigue, neuropsychological impairments and suicidal thoughts. Therefore, the following mental health objectives related to mental health and psychosocial care are pursued:

  • Raise awareness of the importance of mental health and psychosocial care for CAYA cancer survivors.
  • Better understand the current status and gaps in mental health and psychosocial care in Europe.
  • Develop a standard for mental health and psychosocial care for CAYA cancer survivors, including dissemination materials to support adoption of the standard into national health policy.

Deliverable 3.1* – Position paper ready for submission as open access publication in a journal (Mental Health & Psychosocial Care after CAYA cancer)

Link to deliverable: Recommendations for Mental Health & Psychosocial Care After Caya Cancer – Standard, Not Luxury

Translations:

Mental Health Awaraness and Guidance Pocket Cards: EU-CAYAS-NET Pocket Cards for Mental Health Awareness and Guidance

VIENNA DECLARATION: Improving the Mental and Psychosocial Health of Youth Cancer Survivors

Education & Career Support

Together with psychosocial health professionals from CAYA oncology, the network collects and builds on existing, best-practice materials and projects regarding re-integration to school/education and career support projects, and make resources available for patients, survivors, carers and Health Care Professionals.

Deliverable 3.2 – Train-the-Trainer concept for Health Care Professionals on education & career support for survivors

Link to deliverable: Train-the-Trainer Concept

Deliverable Description: Train-the-Trainer Manual for Education and Career Support

Deliverable 3.3 – Career Support for Young People Living With and Beyond Cancer

This report highlights the challenges young people living with and beyond cancer face in education and employment. It provides insights, practical interventions, and a call to action to improve career opportunities and enhance their quality of life.

Report: A Report from the EU-CAYAS-NET on Career Support for Young Cancer Survivors

Transition

The transition from paediatric to adult care often presents disruptions for survivors as there are no formal transition programs in place. This gap leaves many survivors without appropriate support and continuity of care. The widespread lack of transition programs across Europe poses a challenge for patients, as it significantly affects their health-related quality of life.

Recognizing the critical need for improved survivorship care, a comprehensive evidence-based transition guidelines are developed as part of the EU-CAYAS-NET project. The guidelines aim to standardize and improve the transition process for young survivors to ensure consistent and effective support across the European Union. All recommendations will soon be made available in their entirety, providing a thorough resource for those seeking in-depth information. A scientific paper will be published by the end of 2024, offering detailed insights and supporting data from our research.

A visual summary is already available and offers an accessible and engaging overview of the key elements and recommendations of the transition guideline, specifically tailored for childhood and adolescent cancer survivors. Our aim is to provide stakeholders, including healthcare providers, patients, and families, with a clear understanding of the guideline’s purpose, main content and some example recommendations.

Deliverable 3.3* – Transition guideline prepared for submission/publication as open access, including guideline visual summary for advocacy use.

Link to deliverable: Summaries of Transition Guideline

Translations:

Late Effects & LTFU Care.

75% of survivors of childhood, adolescent, and young adult cancer (CAYAS) develop late health problems that need life-long follow-up care. Depending on the type of cancer, its stage and subsequent therapy, these late effects can vary greatly. Tailored Long-Term Follow-Up (LTFU) care should therefore be standard to minimize the burden of these late effects and their negative impact on the quality of life of survivors. Unfortunately, the majority of survivors within Europe do not receive adequate LTFU care and there are large differences between European countries.

We aim to identify both best practices as well as gaps in LTFU care in order to develop a roadmap on how to implement optimal LTFU care across Europe. In addition, evidence-based follow-up care recommendations for no less than 45 different kinds of late-effects after CAYA cancer are made available to young cancer survivors in plain language. These PanCare PLAIN brochures support survivors in their own health-management by providing them with understandable knowledge about their needs for LTFU Care.

Deliverable 3.4* – Position Paper on the need for LTFU care to be seen as the final step of successful cancer treatment

Link to deliverable: Recommendations for LTFU Care to Be Seen As The Final Step of Successful Cancer Treatment

BARCELONA DECLARATION: Improving the Long-Term Follow-up Care for Young Cancer Survivors

Translations: NOT READY

Summary Report: Optimizing Quality of Life after Youth Cancer

This position paper summarizes actionable recommendations from the Quality of Life – work package of the EU-CAYAS-NET project, addressing mental health, education & career support, transition and follow-up care gaps across Europe.

Link to the position paper: Mental Health & Psychosocial Care, Transition and Long-Term Follow-up Needs During CAYA Cancer Survivorship – Standard, Not Luxury

*While jointly elaborating and planning the methodologies of all WP3 tasks (Mental Health & Psychosocial Care, Education & Career Support, Transition, Late Effects & LTFU) it became more and more evident that there were important synergies and overlaps in the methodology and implementation, as well as highly significant interconnections in the outcomes. Therefore, it was decided to combine the three papers mentioned above to one joint White Paper (instead of three papers separated from each other), to optimally reflect and demonstrate the holistic approach and continuity of care which is needed for optimal life-long survivorship care.