Upscaling AYA Cancer Care Towards Establishing Minimum Standards of Care for Adolescents and Young Adults (AYA) across Europe

Objective

The virtual roundtable on December 11th, 2023, brought together leading experts and stakeholders under the theme “Upscaling AYA Cancer Care: Towards Establishing Minimum Standards of Care for Adolescents and Young Adults (AYA) Across Europe.” The focus was on addressing the burden of disease in the 15-39 age group and advocating for improved standards of care.

Key Highlights

  • Burden of Disease: The discussion commenced with a sobering acknowledgment of the global impact of cancer on the AYA population. In 2019 alone, 1.19 million incident cancer cases and 396,000 deaths were reported among individuals aged 15-39 worldwide. Notably, disparities in incidence and mortality rates were observed based on Socio-Demographic Index (SDI) levels.

Distinguished Panelists

The roundtable featured esteemed panellists representing diverse fields and institutions, including:

  1. Ulrike Leiss – Medical University of Vienna
  2. Johan De Munter – University Hospital Ghent Cancer Centre
  3. Carina Schneider – CCI Europe, CEO
  4. Andrea Ferrari – Fondazione IRCCS Istituto Nazionale Tumori of Milan
  5. Tim Van Hoorenbeke, Sonia Silva, Erik Sturesson, Elena Arsenie-Constantinescu, Ana Totovina, Nicola Unterecker, and Oriana De Sousa – Youth Cancer Europe

Special Contributor

  • Dr Jan-Willem Van-de-Loo – Special Contributor, DG Research and Innovation, European Commission

Chairs

  • Daniel Stark – University of Leeds
  • Katie Rizvi – Chair, Youth Cancer Europe

Key Takeaways

  1. Unified Funding Approach: Advocacy for unified funding strategies for both paediatric and adult oncology units.
  2. Collaborative Care: Promoting collaborative efforts between paediatric and adult oncology units for comprehensive AYA care.
  3. Structured Staff Recruitment: Advocating for structured funding to recruit qualified staff dedicated to AYA care.
  4. EU Support: Utilizing European partnership and EU funding for transforming health and care systems.
  5. Harmonized Age Range: Stakeholders unanimously emphasized the need to harmonize the AYA age range across Europe, challenging the current 15-39 age bracket.
  6. Legislative Advocacy: Encouraging legislative changes at various levels to ensure life-saving therapies for AYA patients.
  7. Patient Involvement: Advocating for increased AYA patient involvement in decision-making processes and clinical trials.
  8. Knowledge Exchange: Promoting knowledge exchange and benchmarking studies among European centers.
  9. Transparency and Research: Emphasizing the importance of transparent treatment options, synergy with adult treatments, and fostering research development.

Conclusion

The virtual roundtable concluded with a call to action, urging collective efforts for legislative changes, increased funding, and collaborative initiatives to enhance AYA cancer care across Europe. The outlined takeaways provide a comprehensive roadmap for advancing the standards of care, underscoring the commitment of stakeholders to prioritize the well-being of AYA individuals facing cancer.