Adolescents and Young Adults Living With an Uncertain or Poor Cancer Prognosis: The “New” Lost Tribe

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  • 1 Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute,
  • 2 Department of Medical Oncology, Netherlands Cancer Institute – Antoni van Leeuwenhoek, Amsterdam, and
  • 3 Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, Rotterdam, the Netherlands;
  • 4 Division of Cancer Sciences, University of Manchester, Manchester, United Kingdom;
  • 5 Department of Hematology, and
  • 6 Department of Neurology, Erasmus University Medical Center, Rotterdam, the Netherlands; and
  • 7 Division of Clinical Studies, Institute of Cancer Research, and the Royal Marsden NHS Foundation Trust, London, United Kingdom.
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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.

Disclosures: The authors have disclosed that they have not received any financial consideration from any person or organization to support the preparation, analysis, results, or discussion of this article.

Funding: Dr. Husson is supported by a Social Psychology Fellowship from the Dutch Cancer Society (#KUN2015-7527). Drs. Husson and Burgers are supported by a grant from the Netherlands Organization for Scientific Research (VIDI198.007).

Disclaimer: The funder had no role in the writing of this commentary or the decision to submit it for publication.

Correspondence: Olga Husson, PhD, Department of Medical Oncology, Netherlands Cancer Institute – Antoni van Leeuwenhoek Hospital, Plesmanlaan 121, 1066 CX Amsterdam, the Netherlands. Email: o.husson@nki.nl
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