Bringing Survivorship Information to AYA Cancer Patients

Members of the OHSU Knight Cancer Institute Adolescent and Young Adult (AYA) Oncology Program are  leading a project funded by the Center for Disease Control's National Comprehensive Cancer Control Program (NCCCP). We are developing and testing a new way to distribute cancer survivorship materials using the Internet.

The project is formally named “Electronic Dissemination of Hematologic Cancer Survivorship Materials with Application to the Adolescent and Young Adult (AYA) Community” and is focused on the adolescent and young adult (AYA) community of patients aged 15-40 who have blood cancers. 

Instead of creating new documents, we are using currently available, nationally recognized materials for collecting cancer treatment summary information (for example, the Lance Armstrong Foundation LIVESTRONG Guidebook). 

Our goal is to create these summaries electronically by linking with OHSU’s electronic medical record (EMR) system.  Results from these electronic treatment summaries will be used with the EMR to deliver patient education materials tailored to the unique needs of the AYA population and the individual AYA patient. 

The OHSU Knight Cancer Institute is well suited to conduct this project because of its local blood cancer, AYA and electronic medical record expertise.  We already have strong relationships at the state and national level with the Lance Armstrong Foundation (LAF), LAF Young Adult Alliance, Oregon chapter of the Leukemia and Lymphoma Society, Oregon Clinical and Translational Research Institute (OCTRI) and National Cancer Institute.