Electronic Dissemination of Hematologic Cancer Survivorship Materials with Application to the Adolescent and Young Adult (AYA) Community OHSU Cancer Institute CDC Meeting

ADOLESCENT AND YOUNG ADULT (AYA) ONCOLOGY Cancer diagnosed in 20-30 year-olds: 65,000 – 70,000 per year Leading natural cause of death In contrast to younger and older cancer patients, survival rates for young adults have not increased since 1975 Young adults with cancer face a variety of unique short- and long-term medical and psychosocial issues

LYMPHOMA AND LEUKEMIA IN AYA

AVERAGE ANNUAL PERCENTAGE CHANGE SEER Monograph 2006

NHL SURVIVAL SEER Monograph 2006

AGE DISPARITY: LYMPHOMA AND LEUKEMIA SURVIVAL SEER Monograph 2006

AYA Oncology Program: Mission Provide comprehensive and individualized diagnostic, therapeutic, supportive, and long-term care transition services to adolescents and young adults (age 15-40) diagnosed with cancer Serve as a research base and informatics hub for AYA oncology Integrate these activities to create and share knowledge of AYA oncology

TARGETING AYA POPULATION Multiple sites for care/Loss to follow-up Lack of insurance Mobility Unique tumor types Distant specialists and centers Less familiar therapeutic regimens and late effects Lack of tools and education for empowering AYA patients to manage survivorship

Internal Informatics Dissemination

Electronic Evaluation

Active Areas of Focus Evaluation and adoption of minimal elements for the e-Survivorship Treatment Summary Development and Dissemination of Educational Materials for Survivors, their families and caregivers Tool Deployment and Integration with other efforts (Survivorship Centers, caBIG, Clinical Trials Matching etc)