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: NOT READY

Translations: NOT READY

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

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

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.

Deliverable 3.3* – Transition guideline prepared for submission/publication in open access and white paper on transition 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: NOT READY

Translations: NOT READY

*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.