“This collaboration is an essential step towards improving the lives of AYAs”, says group leader Olga Husson. Together with medical oncologist and group leader Winette van der Graaf she coordinates the new European STRONG-AYA consortium, uniting experts from all over Europe, including patients.
“This project will ensure that the values, needs and perspectives of young people in our communities will not only be fairly represented but will provide the basis for the future of AYA-centered healthcare in Europe,” says patient advocate Katie Rizvi, founder of Youth Cancer Europe
“In contrast to children, in most places AYA’s aged older than 18 years have no dedicated age-specific care,” says van der Graaf, “while they are in a unique phase of life. Topics like fertility, education and work, romantic relationships and sexuality, raising young children, and financial independences often play an important role in their lives, which are turned upside down by a cancer diagnosis. In the Netherlands, we initiated an AYA-dedicated care network and we are already studying the incidence, risk factors and mechanisms of impaired health outcomes.”
This new European network will allow for upscaling our national effort. “The number of patients in the Netherlands is relatively small. So we really need this large-scale network for collecting a substantial amount of data to be able to answer the most important questions that can improve healthcare. By teaming up internationally we can achieve so much more.”
The STRONG-AYA network aims to improve healthcare for AYAs with cancer by taking three steps over the next five years. Firstly, the participants (see list below) will develop a standard set of outcomes that are most relevant for AYAs. “It is very important to reach international consensus on such a core outcome set of data so that everyone collects the same data and pooling these data allows for solid scientific research,” says Husson. Secondly, the network will start using these standard outcomes in five national healthcare systems: France, Italy, Netherlands, United Kingdom and Poland. And, last but not least, the consortium aims to develop innovative models for predicting which patients are at risk of inferior health outcomes and improve national care practices, enforced by benchmarking between countries. This will be facilitated by dissemination of STRONG-AYA data to different stakeholders including researchers, healthcare professionals, patients and policy-makers and extend the acquired knowledge beyond this network.