Next steps for adolescent and young adult oncology workshop: An update on progress and recommendations for the future

Abstract

Each year, 70,000 adolescents and young adults (AYAs) between ages 15 and 39 years in the United States are diagnosed with cancer. In 2006, a National Cancer Institute (NCI) Progress Review Group (PRG) examined the state of science associated with cancer among AYAs. To assess the impact of the PRG and examine the current state of AYA oncology research, the NCI, with support from the LIVESTRONG Foundation, sponsored a workshop entitled “Next Steps in Adolescent and Young Adult Oncology” on September 16 and 17, 2013, in Bethesda, Maryland. This report summarizes the findings from the workshop, opportunities to leverage existing data, and suggestions for future research priorities. Multidisciplinary teams that include basic scientists, epidemiologists, trialists, biostatisticians, clinicians, behavioral scientists, and health services researchers will be essential for future advances for AYAs with cancer. Cancer 2016;122:988–999. © 2016 American Cancer Society

Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology

“…1,[3][4][5][6] In the United States, approximately 10% of patients 15 to 19 years of age and 1% to 2% of patients 20 to 39 years of age are enrolled in clinical trials. 7 In addition to the low rate of participation in clinical trials, several other factors contribute to the poor outcome in AYA patients, such as differences in disease biology, lack of consistency in treatment approaches, poor adherence or intolerance to therapy, lack of health insurance, delays in diagnosis, and physician's lack of familiarity with cancer in the AYA population.…”

“…8 AYA patients also face unique developmental and psychosocial issues that make adjustment to their disease, health-maintenance, and financial hardships more challenging. 6,[9][10][11][12] The biology, epidemiology, and clinical outcomes affecting AYA patients are usually different than those of younger and older patients with cancer. 13,14 In addition, the genetic, physiologic, and pharmacologic changes associated with AYA patients may impact their ability to tolerate cancer therapy and their response to treatment.…”

“…J Palliat Med 2009;12:337-342. 6 • It is imperative for health care professionals not to assume that AYA patients may be less inclined to discuss death and other end-of-life issues.…”

“…16 The AYA patient is generally defined as an individual 15 to 39 years of age at the time of initial cancer diagnosis. 6,17 Nearly 70,000 people in this age group are diagnosed with cancer each year in the United States, which is more than 7 times more people than are diagnosed at younger than 15 years of age. 17 Compared with children younger than 15 years, 5-year relative survival in AYA patients is worse for those with acute lymphoblastic leukemia, acute myeloid leukemia (AML), Hodgkin lymphoma (HL), non-Hodgkin's lymphoma (NHL), astrocytomas, Ewing sarcoma, rhabdomyosarcoma, or osteosarcoma.…”

“…2 • An advance care planning document is recommended for terminally ill AYA patients with metastatic cancer. 3,6 • Ongoing psychosocial support is extremely important during the transition to end-of-life care. For family and friends, grief from loss may begin before death.…”