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

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.

Adolescent and Young Adult (AYA) Cancer Survivorship Practices: An Overview

“…We are at the beginning of a journey to understand how to provide the best surveillance, and follow-up care that will enable HCPs and empowers AYA cancer survivors to (1) minimize the risk of adverse long-term and late effects and (2) mitigate the multiple factors that potentially negatively affect subsequent morbidity and mortality. Special attention should be paid to the unmet needs of AYAs living with an uncertain and poor prognosis [ 17 ]. Although lessons can be learned from the published evidence in pediatric and adult oncology survivors, not all are applicable to AYAs.…”

“…In addition, despite the progress made for several cancers, there is also a group of patients living with an uncertain and/or poor cancer prognosis (UPCP). This includes patients undergoing established treatment with a life expectancy of 1 to 5 years (e.g., colorectal cancer stage IV), low-grade glioma survivors with a life expectancy of 5 to 10 years, and “new survivors” undergoing novel treatment(s) with uncertain prognosis (e.g., melanoma stage IV) [ 17 ]. Common challenges among AYAs with a UPCP include the loss of control of their life and disruption of developmental milestones, (unknown) effects of constant, aggressive, or novel treatments, a sense of social isolation (within the healthcare system and from peers), a constant balance between hope and risks, a lack of evidence-based prognostic information (e.g., due to a lack of focus on this specific patient group) and experiencing uncertainty about treatments (effectiveness and availability) [ 17 ].…”

A qualitative study on the challenges health care professionals face when caring for adolescents and young adults with an uncertain and/or poor cancer prognosis

“… 8 AYAs with a UPCP are those with advanced or metastatic cancer for whom there is no reasonable hope of cure, indicating that patients will die prematurely from cancer, but without immediate threat of death. 9 Patients with a UPCP are either those (i) treated with standard established treatments (e.g. chemotherapy; traditional survivors with a life expectancy of 1-5 years), (ii) undergoing novel treatment(s) (e.g.…”

Lung metastasectomy for osteosarcoma in children, adolescents, and young adults: proof of permanent cure

“…Continuing efforts to investigate prognostic factors related to the individual survival of patients with osteosarcoma are needed, particularly in the critical subset of AYA. 29 The extended follow-up of this consecutive series of children and AYA with metastatic osteosarcoma proves that with repeated lung metastasectomy and chemotherapy, a permanent cure can be achieved when offered to properly selected patients.…”