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Adolescent & Young Adult Health Outcomes & Patient Experience Study:
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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 Foundation (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
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