Expanded Adolescent and Young Adult Study - Extension

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Compared to younger and older aged cancer populations, SEER data suggest that 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, the National Cancer Institute partnered with the Lance Armstrong Foundation and developed a Progress Review Group (PRG) to address the special research and cancer care needs of the AYA cancer population. The PRG identified important potential factors related to cancer care delivery that may contribute to the poorer relative outcome for many AYA cancer patients including: the patient access to care, delays in diagnosis, the cancer treatment setting and specific treatment practices used by care providers. Using the data provided by SEER the recent Progress Review Group (PRG) Report on Cancer in Adolescent and Young Adults (AYA) determined that follow-up of AYA was a high priority. While survival has been increasing for most age groups, it has not for AYA. Therefore, the PRG suggested a special emphasis should be placed on collection of current and complete treatment data for these individuals diagnosed with cancer. 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 part because diagnosing physicians seldom refer these patients to trials. Inconsistency in care, coupled with insufficient research data, has 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 was a high scientific priority. To address these gaps, we have assembled a trans-NCI and extramural team to plan a feasibility study to include approximately 500 AYA patients beginning in October 2007.