Adolescent and Young Adult (AYA) Oncology and Oncofertility Program
Individuals diagnosed with cancer between 15 and 39y (AYA: adolescents and young adults) are at a vulnerable time in their development from a social, emotional and cognitive perspective; thus, there are many unmet needs related to health and well-being that are unique to the AYA population. AYA have inferior outcomes when compared with children <15y, and outcomes continue to lag behind children over time. Enrollment on therapeutic clinical trials correlates strongly with survival, suggesting that clinical trial enrollment plays an important role in clinical AYA care; however, the proportion of AYA enrolled on clinical trials drops with age. These observations collectively resulted in the National Cancer Institute (NCI) issuing a mandate to address the unique vulnerability and needs in AYA, while the National Comprehensive Cancer Center Network (NCCN) began issuing guidelines regarding optimal care of AYA patients.
AYA Oncology and Oncofertility Program (est. 2018)
Key areas identified for the Program to address include: (1) fertility preservation, (2) health insurance/ financial counseling, (3) clinical trial enrollment, (4) AYA-specific psychosocial support, and (5) transition to survivorship. To do this, the AYA Program Research Coordinator identifies patients new to the UAB (pediatric or adult oncology) system 15 to 39 years of age with a new diagnosis of cancer, or newly relapsed disease. Information regarding available fertility preservation, relevant clinical trials and AYA psychosocial support is sent to the patient’s clinical team along with the AYA Disease Team Leads for the specific disease in question (from both Pediatric and Adult Oncology). An AYA Tumor Board meets each month. This is led by the two disease team leads from a disease group, with disease groups taking turns each month.
Cohort Study
A prospective cohort study leverages the infrastructure above by approaching newly diagnosed or newly relapsed AYAs across pediatric and adult oncology, aiming to identify patient-level and facility-level barriers and facilitators to fertility preservation and clinical trial accrual. This study also aims to investigate the impact of these domains on psychosocial and clinical outcomes.
Coordinating Center for Multi-site AYA Studies
The Program serves as a coordinating center for three national multi-site AYA studies at present. (1) AYA ALL Consortium: Paired adult and pediatric oncology groups at multiple sites are participating in an innovative study among AYA with ALL investigating healthcare- and patient-level barriers and facilitators to an important aspect of therapy (oral 6-mercaptopurine). This was initiated with foundation funding at 7 sites and now expanded to 14 sites (R01-CA248439, PI Wolfson). (2) A041501-HO1: This health outcomes study is embedded within the front-line NCI National Clinical Trials Network (NCTN) therapeutic ALL study (A041501). The health outcomes study investigates adherence to oral chemotherapy (6-mercaptopurine) among AYA with ALL. (3) ACCL16N1CD: This intergroup study is examining care delivery among AYA with ALL treated National Community Oncology Research Program sites. The central review for all patients (over 309 enrolled) is coordinated by the Program.