139th National Cancer Advisory Board
with issues such as access, clinical trials and research, health-related QOL, special populations, and awareness. Dr. Anderson reviewed the unique ways many of these issues affect patients in this age range.
Priority Recommendations. Dr. Albritton presented the first three recommendations of the AYAO PRG report and reviewed some of the underlying rationale for their development. Recommendation 1 is to identify the characteristics that distinguish the unique cancer burden in the AYAO patient. More specifically, the recommendation is to elucidate the unique biologic characteristics of AYA cancers and AYAO patients, elucidate life-stage and developmental characteristics, and identify and work to ameliorate health disparities. The priority tumors for this population were defined as sarcoma, leukemia, lymphoma, breast cancer, and colorectal cancer. Recommendation 2 is to provide education, training, and communication to improve awareness, prevention, access, and quality cancer care to AYAs. More specifically, the recommendation is to: raise awareness of AYA issues as a first step toward increasing the national focus and resource allocation; provide targeted education to patients, families/caregivers, and the public; and educate multidisciplinary providers to improve referrals and services. Recommendation 3 is to create the tools to study the AYA cancer problem. More specifically, the recommendation is to create a large prospective database to facilitate research, increase the number of annotated specimens to support research progress, create and modify the needed assessment tools, improve grant coding and search term standardization for evaluation purposes, and expand clinical trials to increase AYA treatment choices and accelerate treatment advances.
Dr. Caligiuri presented and briefly discussed the final two recommendations. Recommendation 4 is to ensure excellence in service delivery across the cancer control continuum. This includes developing, evaluating, and disseminating standards to improve outcomes and establishing a network or coalition of providers and advocates seeking to achieve a standard of excellence in AYA cancer care. Recommendation 5 is to strengthen and promote advocacy and support of the AYA cancer patient. More specifically, the recommendation is to address the subjective experience of AYA patients, build the capacity of existing resources to address AYA psychosocial needs, and evaluate existing programs and develop new interventions. Dr. Caligiuri cited Planet Cancer as a valuable resource for addressing psychosocial needs, but noted the need for broader dissemination. In regard to program evaluation, he emphasized the need for outcomes research to better understand what the best interventions are.
Dr. Caligiuri concluded by outlining steps that will be taken in Phase II of the AYAO PRG process. An Implementation Meeting is scheduled for November 10-12 in Austin TX, sponsored and organized by the LIVESTRONG Young Adult Alliance. The cross-disciplinary nature of the process will be maintained as diverse stakeholders from all backgrounds meet to provide a focused and structured approach to improving cancer prevention, cancer care, and QOL for adolescents and young adults with cancer.
Questions and Answers
Dr. Chabner questioned whether data had been presented to establish a survival problem in this group, noting that survival appeared to be high in comparison with older people and even younger people. In discussion it was noted that the reason could be that this is a group of diseases that have good prognoses, and that there is a need to gain understanding on a disease-by-disease basis. Dr. Albritton agreed that a biology- and disease-specific study would be needed for optimal understanding of the AYAO situation. Dr. Chabner cautioned against balkanization of the research area and for ensuring that there is enough understanding of the problem to warrant a special research effort. Dr. Meneses commended the fact that the AYAO problem was approached also from a developmental perspective in terms of the needs of this particular group. She suggested that contemporary communications vehicles be employed for disseminating educational materials. Dr. Runowicz questioned the age parameters chosen