Adolescents and young adults (AYA) are a distinct group at the interface between children’s and adult’s cancer services that require specific clinical management and care. This survey explored health care providers' practice patterns, knowledge and available services regarding AYA cancer care.
A link to an online survey was sent by e-mail to all members of ESMO and SIOPE, ESMO national representatives and circulated to several European oncology groups. The questions covered the following topics: demographics, education and access to specialized care for AYA, research and supportive care opportunities, as well as demands for further education. Contingency tables for each question were calculated and were further explored by sub region in Europe using chi-squared and Fisher’s exact test.
323 responses were collected from all countries across the world. We report the results from the 266 practitioners responding from Europe. Over two-thirds report that they: Do not have access to specialized centers for AYA with cancer (67%), Are not aware of any cancer research studies or clinical trials focused on AYA (69%), Have no access to a specialist cancer service for late effects management (67%). The majority of the professionals responding are able to refer AYA patients to professional psychological support and specialized social workers. However more than half report no access to an age-specialized nurse, specialized AYA education or a learning mentor. Furthermore, a substantial number of professionals report that their AYA patients do not have access to fertility specialists (38%), rising to 76% in Eastern Europe (EE). The lack of specialized AYA care was more profound for practitioners from EE and South Eastern European (SE) countries.
Less than one half of European health-care providers who treat AYA with cancer have access to specialized centers and research initiatives for this group of patients with special needs. This survey revealed important under-provision and inequity of AYA cancer care across Europe. Improving care using education and research focused on AYA is a growing priority for both ESMO and SIOPE.
Clinical trial identification
Legal entity responsible for the study
D. Stark: Receipt of research grant income in AYA cancer from the National Institute for Health Research, Cancer Research UK, the Teenage Cancer Trust and research support from Pharmamar Inc and Astra- Zeneca Inc. F.A. Peccatori: Fees from Roche, Astra Zeneca, Clovis and Ipsen. S. Bielack: Fees for participation at Advisory Boards in Pfizer, Bayer, Lilly, Novartis, Isofol. All other authors have declared no conflicts of interest.