Adolescent and young adults cancer care peer visits general report

Italy – Belgium – Netherlands

Leading the work on Adolescent and Young Adult Cancer Care (AYA oncology) in the EU co-funded European Network of Youth Cancer Survivors project, between May and July 2023 Youth Cancer Europe facilitated Peer Visits by 30 young people from 16 countries with lived experience of cancer, visiting a total of 5 hospitals in Italy, Belgium and the Netherlands.

Peer Visits represent an innovative and creative approach to research that integrates both observational and participatory elements. In our specific context, young people living with and beyond cancer participating in Work Package 4 had the valuable opportunity to be physically present on-site, enabling them to closely observe, interact, and engage with healthcare professionals and other service providers.

Currently, specialized services for adolescents and young adults (AYAs) facing cancer are limited to a few major centers across Western and Northern Europe. In order to advocate and raise awareness for the unique needs of AYAs with cancer, EU-CAYAS-NET aims to unite a large spectrum of voices, including young people living with and beyond cancer, healthcare professionals, researchers, and patient support organizations, and outline the recommendations for minimum essential requirements for AYA cancer centers across the European Union and beyond.

The primary goal of the Peer Visits was to better understand how care delivery models work, 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. These valuable insights were meticulously gathered through structured peer observation forms, structured surveys, personal notes, and semi-structured interviews with both local patients and healthcare personnel.

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

  • “Being able to take part in three peer visits was a privilege. First of all, having the chance to meet so many amazing people from across Europe who are all heavily motivated to observe and give their views, and what they see and hear is hard to put into words. Sharing knowledge and good practices is so important, especially when you hear from others that in their own country, AYA care is non-existent. I do believe we as EU-CAYAS-NET should take the next step with the outcome of these peer visits to address policymakers on a European level, but even on the different national levels so that AYA-care can be guaranteed for everybody”
  • “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, minimizing 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”
  • “I loved every single second of it. Being in a group of young cancer survivors who are engaging in a process to help others who are battling cancer is a wonderful and meaningful experience”

Peer Visits have proven to be highly effective in data gathering, significantly raising awareness about AYA initiatives, and building an extensive international network of patient advocates. This gathered data will directly contribute to the creation of a position paper and policy recommendations, reinforcing the efforts of EU-CAYAS-NET to improve the quality of life of AYA cancer survivors within the European Union and beyond.