Next Step for Global Adolescent and Young Adult Oncology: A Core Patient-Centered Outcome Set
Cet article met en évidence le besoin d'un outil permettant de mettre en commun au niveau international les données de recherche pour la prise en charge des adolescents et jeunes adultes (15-39 ans) atteints d'un cancer
The relatively small number of cancers in the adolescent and young adult (AYA) age group, those aged 15–39 years, does not appropriately reflect the personal and societal costs of cancer in this population, as reflected in the potential years of life lost or saved; the decreased productivity and health-related quality of life due to the impact of the disease during formative years and long-term complications or disabilities. Improvements in care and outcomes for AYAs with cancer require collaboration among different stakeholders at different levels (patients, caregivers, healthcare professionals, researchers, industry, and policymakers). Development of a Core Outcome Set (COS), an agreed minimum set of outcomes that should be measured globally in research, routine clinical practice, specifically for AYAs with cancer, with outcomes that are well defined based on the perspective of those who are affected and assessed with validated measures is highly required. A globally implemented COS for AYAs with cancer will facilitate better pooling of research data and the implementation of high-quality healthcare registries, which by benchmarking not only nationally, but also internationally, may ultimately improve the value of the care given to these underserved young cancer patients. We reflect on the need to develop a COS for AYA with cancer, the arenas of application and the challenges of implementing an age-specific COS in research and clinical practice.
Journal of the National Cancer Institute , résumé, 2020