Unveiling the “Recommendation and Implementation Roadmap for Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Units” Position Paper - Youth Cancer Europe (YCE)

Unveiling the “Recommendation and Implementation Roadmap for Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Units” Position Paper

After visiting 5 European hospitals last year to learn and observe the best practices in Adolescent and Young Adult Cancer Care (AYA oncology) as part of the European Union Co-funded project European Network of Youth Cancer Survivors, our “Recommendation and Implementation Roadmap for Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Units”  Position Paper is ready to be unveiled!

Read the full English version of our “Recommendation and Implementation Roadmap for Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Unit” Position Paper HERE.

Adolescents and young adults (AYAs) facing cancer represent a unique and often underserved population within Europe’s healthcare landscape. Adolescents and Young Adults (AYA) with cancer, aged between 15 and 39 years at the time of diagnosis, experience distinct biological and psychosocial needs, but despite their increasing recognition, AYAs still encounter inequitable access to age-appropriate oncology services. Specialised services often remain limited to major centres in Western and Northern Europe, large urban areas, or private settings. As a result, smaller centres, rural areas or non-specialist services contribute to disparities in Adolescents’ and Young Adults’ (AYAs’) access, the care offered, and outcomes, underscoring the critical need for a concerted effort to advocate for and establish Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Units. 

Leading the Adolescent and Young Adult (AYA) Cancer Care Work Package within the European Network of Youth Cancer Survivors project, Youth Cancer Europe facilitated three Peer Visits between May and July 2023.

Peer Visits represent an innovative and creative approach to research that integrates both observational and participatory elements. In our project, 30 young people living with and beyond cancer – members and ambassadors of the European Network of Youth Cancer Survivors – had the opportunity to be physically present on-site and visit the hospitals.

This enabled them to closely observe, interact, engage with healthcare professionals and other service providers, conduct interviews, and note specific aspects of care for Adolescents and Young Adults (AYAs) with cancer. They focused on specific aspects of care, including long-term follow-up of late effects and transition from paediatric to adult oncology.

Below are some of the statements shared by the Peer Visits participants:

“Peer visits allowed us to gain a more comprehensive view of the best practices across Europe. These visits also allow us to strengthen our ties with the Adolescents and Young Adults (AYAs) who are involved in the network and gain a greater desire to remain active in the patient advocacy field. Moreover, I think to be a patient advocate it is crucial to have a vision beyond our personal, up-to-date experience. I hope all of this work will result in a push for rapid improvement in healthcare for cancer patients and survivors in Europe, minimising disparities”

“Being able to visit other institutions and observe best practices is highly educational and useful as a patient advocate. It gives a foundation for arguing for AYA’s special needs and for what we should be able to achieve locally”.

Three types of observation were used:

  1. naturalistic observation where the peer visit participants observed the environment where the healthcare professionals were working;
  2. participatory observation where the participants conducted interviews, took notes and photographs;
  3. structured observation, where the participants observed specific aspects of AYA care, filling in a Peer Observation Form.

The primary goal of the Peer Visits was to observe best practices, and identify any gaps in the already existing services. The overarching objective was to enhance our understanding of how AYA cancer care can be elevated and transformed across European countries. All the insights were gathered through structured Peer Observation Forms, structured surveys, personal notes, and semi-structured interviews with both local patients and healthcare personnel.
This gathered data contributed to the creation of the our “Recommendation and Implementation Roadmap for Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Units” Position Paper, reinforcing the efforts of EU-CAYAS-NET to improve the quality of life of AYA cancer survivors within the European Union and beyond. This Position Paper resulted from a mixed-method and interdisciplinary approach, integrating insights from Adolescents and Young Adults, healthcare providers, researchers, and other stakeholders. It calls on policymakers, healthcare professionals, and advocacy groups to prioritise the specific needs of Adolescents and Young Adults (AYAs), ensuring they have access to high-quality care that addresses all aspects of their health and well-being.

After each visit, a structured report was completed, which enabled us to write specific recommendations that are comprehensive, evidence-based, and actionable, described in two parts:

  • A Checklist for Minimum Standards of Care organised into three chapters: 
  1.  Age-Appropriate Built Environment 
  2. Clinical Care Organization and Patient Pathways  
  3. Support Services
  • An Implementation Roadmap with eight recommendations
  1. Develop a National Knowledge Hub
  2. Invest in Training, Education, and Resource Optimization
  3. Integrate Adolescent and Young Adult (AYA) – specific Care Across All Cancer Treatment Settings
  4. Expand Access to Mental Health Services
  5. Empower Adolescents and Young Adults (AYAs) Through Participation in Care Discussions
  6. Enhance Integration and Interoperability of Healthcare Systems and Digital Health Platforms
  7. Promote Research and Innovation
  8. Advocate for Policy and Practice Changes

Read the full English version of our “Recommendation and Implementation Roadmap for Minimum Standards of Specialist Adolescent and Young Adult (AYA) Cancer Care Unit” Position Paper HERE.