Improving Quality of Life
The European Network of Youth Cancer Survivors (EU-CAYAS-NET) is dedicated to improving the quality of life for young cancer survivors. We provide a range of resources, including a comprehensive white paper and an Education & Career Support map.
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).
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.
Summary Report: Optimizing Quality of Life after Youth Cancer
Actionable recommendations from the Quality of Life work package
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.
EU-CAYAS-NET Quality of Life White PaperObjectives
Work Package 3 focuses on developing comprehensive network platform content for healthy survivorship
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.
Objectives:
- 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.
Deliverable 3.1: Position Paper
Mental Health & Psychosocial Care after CAYA cancer
Recommendations for Mental Health & Psychosocial CareTranslations:
Mental Health Pocket Cards
Awareness and Guidance materials
Vienna Declaration
Improving Mental and Psychosocial Health
Joint Recommendations for Mental Health and Psychosocial Care
This comprehensive resource provides a harmonised set of joint recommendations to improve the mental health and psychosocial well-being of CAYA cancer patients and survivors. Developed through co-creation involving survivors, patient advocates, HCPs, and researchers.
Access RecommendationsEducation & Career Support
Together with psychosocial health professionals from CAYA oncology, the network collects and builds on existing best-practice materials regarding re-integration to school/education and career support projects.
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.
Recognizing the critical need for improved survivorship care, comprehensive evidence-based transition guidelines are developed as part of the EU-CAYAS-NET project to standardize and improve the transition process for young survivors.
Summaries of Transition GuidelineTranslations:
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. Tailored Long-Term Follow-Up (LTFU) care should therefore be standard to minimize the burden of these late effects and their negative impact on quality of life.
Deliverable 3.4: LTFU Care RecommendationsTranslations:
Roadmap for Optimal LTFU Care:
Recommendations for the implementation of optimal survivorship care for CAYA cancer survivors in Europe.
View RoadmapRoadmap Translations:
Note: While jointly elaborating and planning the methodologies of all WP3 tasks (Mental Health & Psychosocial Care, Education & Career Support, Transition, Late Effects & LTFU) it became evident that there were important synergies and overlaps. Therefore, it was decided to combine three papers into one joint White Paper to optimally reflect the holistic approach and continuity of care needed for optimal life-long survivorship care.