139th National Cancer Advisory Board
Senior Clinical Investigator, Cancer Therapy Evaluation Program (CTEP), NCI; Dr. Karen Albritton, PRG CO-Chair, and Director, Adolescent and Young Adult Oncology, Dana-Farber Cancer Institute; and Dr. Michael Caligiuri, Nationwide Professor and Director, Comprehensive Cancer Center and Division of Hematology and Oncology, Ohio State University. Ms. Nichols acknowledged and thanked NCI and contractor staff who contributed to this report.
Overview. Dr. Anderson began by reviewing the rationale for the AYAO PRG: (1) cancer in the AYAO age range is a significant problem—almost 68,000 individuals ages 15 to 39 years were diagnosed with the disease in 2002 and there were more than 10,000 deaths; (2) AYA patients lack a health care niche; medicine and society are largely unaware of that population; and (3) survival in the AYAO age group has not improved in more than 2 decades, according to Surveillance, Epidemiology, and End Results (SEER) data from 1975 to 1998. Dr. Anderson explained that the AYAO PRG’s decision to define the adolescent and young adult population as comprising ages 15 through 39 was based on several issues: the gap in survival improvement is most pronounced in that population; the LIVESTRONG Young Adult Alliance came to the same conclusion based on a number of social and developmental factors; and young adult advocacy groups (Planet Cancer, Young Survival Coalition, Life Lab, and Fertile Hope) consider individuals in the 18-39 age range as their target population. Moreover, although AYAs are a heterogeneous population, programs at institutions serving them recognize this and use developmentally appropriate interventions for subsets within the group.
The charge to the AYAO PRG was threefold: (1) define and describe the issues that are unique to the cancers that occur in the AYA population and which distinguish that group from younger pediatric and older adult cancer patients; (2) assemble a cadre of experts in AYA medicine, biology, psychosociology, behavior, and business to identify what needs to be learned and implemented to promote cancer prevention and improve the survival and QOL of this population; and (3) facilitate the adoption and implementation of cancer research, social and health policy, community programs, and clinical interventions focused on AYA cancer prevention and treatment, and evaluate the impact of these efforts. Dr. Anderson reminded members that the AYAO PRG is a unique partnership between the NCI and LAF created as a result of the mutual interest of the NCI Pediatric Oncology Group and the LAF’s LIVESTRONG Young Adult Youth Alliance. Benefits to the NCI derived from the collaboration include the opportunity to leverage NCI resources and facilitate the PRG process. Moreover, the Alliance’s commitment to the PRG enhances the potential of realizing many of its recommendations. For the LAF, the collaboration has provided the opportunity to address a top priority issue through a process that is firmly established and well recognized.
Dr. Anderson reviewed the organizational structure of the PRG and described the three-phase PRG process. Leadership includes two non-federal Co-Chairs and the Executive Director from the NCI; membership includes 27 representatives of all major areas of expertise across the AYAO spectrum. At its initial all-hands meeting, the AYAO PRG planned a roundtable meeting, which was held this past spring. At the roundtable, 74 participants worked with the PRG to identify areas of need and opportunities to advance research and practice. In regard to the process, the AYAO PRG currently is implementing the final segment of Phase I, which is focused on developing recommendations. The PRG report has been prepared and is being presented to sponsoring agency leaders and the NCAB. Phase II will focus on implementation and begin with the establishment of an implementation group, and Phase III will be the reporting phase.
In regard to the AYAO Roundtable deliberations, Dr. Anderson reported that the participants were organized into 11 breakout groups, which reflected the issues that needed to be addressed. Core topic groups focused on biology, prevention/cancer control/epidemiology/risk, insurance, clinical care models, psychosocial/behavioral factors, and long-term effects. The Cross-Cutting Breakout Groups dealt