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    Adolescents and young adults living with an uncertain or poor cancer prognosis: the 'new' lost tribe

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    Authors
    Burgers, V. W. G.
    van der Graaf, W. T. A.
    van der Meer, D. J.
    McCabe, Martin G
    Rijneveld, A. W.
    van den Bent, M. J.
    Husson, O.
    Affiliation
    Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute. Department of Medical Oncology, Netherlands Cancer Institute - Antoni van Leeuwenhoek, Amsterdam
    Issue Date
    2021
    
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    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
    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.
    Journal
    Journal of the National Comprehensive Cancer Network
    URI
    http://hdl.handle.net/10541/623893
    DOI
    10.6004/jnccn.2020.7696
    PubMed ID
    33668023
    Additional Links
    https://dx.doi.org/10.6004/jnccn.2020.7696
    Type
    Article
    Language
    en
    ae974a485f413a2113503eed53cd6c53
    10.6004/jnccn.2020.7696
    Scopus Count
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    All Paterson Institute for Cancer Research

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