Adolescents and young adults living with an uncertain or poor cancer prognosis: the 'new' lost tribe
AuthorsBurgers, 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.
AffiliationDepartment of Psychosocial Research and Epidemiology, Netherlands Cancer Institute. Department of Medical Oncology, Netherlands Cancer Institute - Antoni van Leeuwenhoek, Amsterdam
MetadataShow full item record
AbstractHistorically, 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
CitationBurgers 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.
JournalJournal of the National Comprehensive Cancer Network
- The Impact of Inflammatory Bowel Disease in Canada 2018: Children and Adolescents with IBD.
- Authors: Carroll MW, Kuenzig ME, Mack DR, Otley AR, Griffiths AM, Kaplan GG, Bernstein CN, Bitton A, Murthy SK, Nguyen GC, Lee K, Cooke-Lauder J, Benchimol EI
- Issue date: 2019 Feb
- End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice.
- Authors: Sansom-Daly UM, Wakefield CE, Patterson P, Cohn RJ, Rosenberg AR, Wiener L, Fardell JE
- Issue date: 2020 Apr
- Needs and Lifestyle Challenges of Adolescents and Young Adults With Cancer: Summary of an Institute of Medicine and Livestrong Foundation Workshop.
- Authors: Daniel CL, Emmons KM, Fasciano K, Fuemmeler BF, Demark-Wahnefried W
- Issue date: 2015 Dec
- Taboo Topics in Adolescent and Young Adult Oncology: Strategies for Managing Challenging but Important Conversations Central to Adolescent and Young Adult Cancer Survivorship.
- Authors: Perez GK, Salsman JM, Fladeboe K, Kirchhoff AC, Park ER, Rosenberg AR
- Issue date: 2020 Mar
- Empowering Adolescents and Young Adults to Support, Lead, and Thrive: Development and Validation of an AYA Oncology Child Life Program.
- Authors: Bergeron S, Noskoff K, Hayakawa J, Frediani J
- Issue date: 2019 Jul - Aug