Adolescents and young adults (AYAs) ages 15-39 with cancer have experienced stagnant survival rates for the past 30 years in comparison to those older or younger diagnosed with cancer. Survival disparities for this population may be due to biologic factors, lack of consistent and effective access to care, and unique psychosocial needs of this age group, and taken together, present an opportunity for health policy intervention. Of particular interest are barriers most important to AYAs themselves, appropriate and timely clinical trial enrollment, and the ability to preserve fertility prior to initiating treatment. These barriers may be more difficult to overcome for AYAs that are from rural areas, those that may be un- or under- insured, of lower socioeconomic status or educational attainment, and other social determinant of health related-factors.
In this dissertation, I examined the factors that drive the challenges encountered by AYAs with cancer and discuss potential solutions to overcome these challenges. The first aim of this dissertation establishes which challenges or aspects of the cancer experience are most important to AYAs using a mixed methods approach. The second and third aims build off of challenges identified in aim one using quantitative methods. In aim two, AYA clinical trial enrollment in the United States is examined using a nationally-representative sample with a specific focus on rural disparities. In aim three, historical utilization of fertility preservation consultations and procedures are studied among AYAs treated a single institution serving a rural population.