1438O_PR - Report on ESMO/SIOPE European Landscape project key results: Mapping the status and needs in AYA cancer care.

Date 11 September 2017
Event ESMO 2017 Congress
Session Public health policy and health economics
Topics Cancer in Adolescents
Cancer in Young Adults
Cancer in Special Situations
Presenter Emmanouil Saloustros
Citation Annals of Oncology (2017) 28 (suppl_5): v605-v649. 10.1093/annonc/mdx440
Authors E. Saloustros1, D. Stark2, K. Michailidou3, G. Mountzios4, L. Brugières5, F.A. Peccatori6, S. Jezdic7, S. Essiaf8, J. Douillard7, S. Bielack9
  • 1Oncology Unit, General Hospital of Heraklion ‘Venizelio’, 71409 - Heraklion, Crete/GR
  • 2Section Of Oncology And Cancer Research, Institute of Molecular Medicine, LS1 - Leeds/GB
  • 3Department Of Electron Microscopy/molecular Pathology, The Cyprus Institute of Neurology and Genetics, 1107 - Nicosia/CY
  • 4Medical Oncology Department, 251 General Airforce Hospital, 000 - Athens/GR
  • 5Children And Adolescent Oncology Department, Gustave Roussy Cancer Campus, 0000 - Villejuif/FR
  • 6Gynecologic Oncology, European Institute of Oncology, 000 - Milan/IT
  • 7Scientific Affairs, ESMO European Society for Medical Oncology, 6962 - Viganello-Lugano/CH
  • 8Executive, SIOPE European Society for Paediatric Oncology, 0000 - Brussels/BE
  • 9Zentrum Für Kinder-, Jugend- Und Frauenmedizin Pädiatrie 5 (onkologie, Hämatologie, Immunologie), Klinikum Stuttgart – Olgahospital, 000 - Stuttgart/CH

Abstract

Background

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.

Methods

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.

Results

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.

Conclusions

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

N/A

Legal entity responsible for the study

ESMO, SIOPE

Funding

ESMO, SIOPE

Disclosure

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.