dc.contributor.author Burgers, V. W. G.
dc.contributor.author van der Graaf, W. T. A.
dc.contributor.author van der Meer, D. J.
dc.contributor.author McCabe, Martin G
dc.contributor.author Rijneveld, A. W.
dc.contributor.author Husson, O.
dc.identifier.citation Burgers VWG, van der Graaf WTA, van der Meer DJ, McCabe MG, Rijneveld AW, van den Bent MJ, et al. Adolescents and Young Adults Living With an Uncertain or Poor Cancer Prognosis: The New Lost Tribe. J Natl Compr Canc Netw. 2021;19(3):240-6. en
dc.identifier.doi 10.6004/jnccn.2020.7696 en
dc.description.abstract Historically, adolescent and young adult (AYA) patients with cancer, diagnosed for the first time at age 15 through 39 years, have often been identified as a "lost tribe" without a medical "home"; neither pediatric nor adult oncology services were able to provide age-appropriate care to this specific group. Internationally, AYA care programs are being established to bridge the gap between the age-defined healthcare worlds and to address the specific needs of AYAs with cancer. However, AYA care programs mostly focus on improving cure rates and addressing survivorship issues, and direct less attention to the unique needs of those living with an uncertain and/or poor cancer prognosis. Additionally, palliative care services are typically poorly equipped to address the age-specific needs of this group. Given that increasingly more AYAs with an uncertain and/or poor cancer prognosis are gaining life years because of novel treatments, and sometimes even face the prospect of long-term disease control, AYA care programs should address the unique palliative care needs of this "new" lost tribe within AYA oncology. This report provides a definition and description of the AYA population living with an uncertain and/or poor cancer prognosis in terms of epidemiologic, clinical, and psychosocial characteristics and challenges, and provides perspectives for future research and care initiatives. It also highlights the need to comprehensively examine the experience of AYAs who are living with uncertain and/or poor cancer prognosis to adjust best care practices for this unique group en
dc.relation.url https://dx.doi.org/10.6004/jnccn.2020.7696 en
dc.title Adolescents and young adults living with an uncertain or poor cancer prognosis: the 'new' lost tribe en
dc.contributor.department Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute. Department of Medical Oncology, Netherlands Cancer Institute - Antoni van Leeuwenhoek, Amsterdam en
dc.identifier.journal Journal of the National Comprehensive Cancer Network en
Authors: Husson O, Manten-Horst E, van der Graaf WT
Cancer in Adolescents and Young Adults: A Narrative Review of the Current Status and a View of the Future.
Authors: Barr RD, Ferrari A, Ries L, Whelan J, Bleyer WA
Authors: Daniel CL, Emmons KM, Fasciano K, Fuemmeler BF, Demark-Wahnefried W