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Adolescent & Young Adult Health Outcomes & Patient Experience Study

Compared to younger and older aged cancer populations, the adolescent and young adult (AYA) population between the ages of 15 and 39 years has seen little or no improvement in cancer survival rates for decades. In 2005, a Progress Review Group (PRG) supported by the National Cancer Institute (NCI) and the Lance Armstrong FoundationExternal Web Site Policy (LAF) identified important factors that might contribute to the poorer outcomes for many AYA cancer patients, including:

  • restricted or delayed access to care;
  • delays in diagnosis; and
  • inconsistency in cancer treatment and follow-up care.

These patients too frequently fall into a “no man’s land” between pediatric and adult oncology. Research on AYAs has been further constrained by their exceedingly low participation in the relatively few clinical trials available to them. In addition, data on psychosocial factors specific to this population (e.g. impact of cancer on education, employment, social and family issues, fertility preservation) are lacking.

Inconsistency in care, coupled with insufficient research data, have prevented the development of guidelines for treating and monitoring AYAs with cancer, and few tools exist to measure the efficacy of treatment and psychosocial interventions delivered in diverse settings. The PRG determined that research in this population is a high scientific priority.

AYA HOPE Survey Files

  • AYA HOPE Survey
  • AYA HOPE Follow-up Survey

Last Modified: 11 Apr 2014