TOWN HALL MEETING

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• Young survivor research.  What research is being conducted for young adults (aged 15–39 years) with cancer?  For example, treatments, diagnosis, fertility,prevention, and education.

Relatively little is known about biologic, genetic, epidemiologic, therapeutic, psychosocial, and economic factors that affect the incidence, disease outcomes, and quality of life of adolescents and young adults (AYAs) diagnosed with cancer.  However, it is known that compared with younger and older age groups, this population—defined as those diagnosed with cancer at ages 15 through 39—has seen little or no improvement in cancer survival rates for decades.

The first monograph to collect detailed information about cancer incidence and outcomes in adolescents and young adults was published in 2006 (http://seer.cancer.gov/publications/aya/). It was developed to gather population-based incidence, mortality, and survival data specific to cancers that occur in the AYA population, along with epidemiological data and risk factors for the development of age-specific cancers. Prepared by NCI’s SEER Program and the Children’s Oncology Group (COG), with special assistance from the Adolescent and Young Adult (AYA) and Epidemiology Committees, volunteer editors and authors from NCI, NCI-sponsored adult cancer cooperative groups (Southwest Oncology Group, Eastern Cooperative Oncology Group, Cancer and Leukemia Group B, National Surgical Adjuvant Breast and Bowel Program, American College of Surgeons Oncology Group), and NCI-designated Comprehensive Cancer Centers, this monograph will help educate medical providers and the public about cancer incidence and survival in this age group, and provide the impetus for further research to improve their survival and quality of life.

In 2005–2006, NCI partnered with the Lance Armstrong Foundation (LAF) to convene an Adolescent and Young Adult Oncology Progress Review Group (AYAO PRG) to assess the special research and cancer care needs of the AYA age group and solicit recommendations for a national agenda to improve cancer prevention, early detection, diagnosis, treatment (including survivorship care), and outcomes among these patients. This AYAO PRG brought together more than 100 experts from diverse disciplines across the research and cancer control enterprise and the advocacy and survivor communities. Their principal focus was on identifying priority interventions for improving the outcomes of people diagnosed with cancer as adolescents and young adults and they made five recommendations.  To view the full report, see http://planning.cancer.gov/disease/AYAO_PRG_Report_2006_FINAL.pdf.

An AYAO research portfolio analysis prepared for PRG purposes showed 235 distinct projects relevant to AYAO research from fiscal years 2002 through 2005.  Of these, 108 were funded by NCI and 127 by other organizations that contribute data to the International Cancer Research Portfolio and the Lance Armstrong Foundation.  The number of AYAO research projects increased during these years for all organizations.

The AYAO PRG suggested that a major research initiative emphasizing clinical trials and outcomes research was urgently needed.  Collaboration and support from numerous governmental, academic, public health, community-based, and private sector entities will be essential to this initiative’s success.

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