Project 1: Fertility and Cancer Care Delivery for Adolescents and Young Adults

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ABSTRACT – Project 1, Fertility and Cancer Care Delivery in AYAs Future fertility is a critical concern for many adolescents and young adults (AYAs) with cancer. National guidelines universally recommend fertility counseling for AYA cancer patients before potentially gonadotoxic treatment begins. However, prior studies have shown that patients often do not receive fertility counseling. With the long-term goal of examining how fertility counseling may enhance cancer treatment adherence and outcomes, this study will investigate: 1) potential disparities in receipt of fertility counseling and access to fertility preservation strategies; and, 2) how fertility concerns impact the receipt of recommended cancer treatments for AYAs with breast cancer, testicular cancer, or lymphoma. Limited access to specialists and unconscious biases in provider referrals may result in demographic, socioeconomic, and disease-related disparities in receipt of fertility counseling and preservation services. When routinely provided, referrals to fertility specialists can be rapid and preservation strategies can be completed within a few weeks. AYAs whose fertility-related concerns are not addressed though counseling and/or fertility preservation strategies may spend more time seeking fertility information or making medical appointments on their own. They may avoid or postpone potentially gonadotoxic therapies, increasing their risk of treatment delays or non-initiation or non-persistence of cancer therapies compared to patients whose fertility-related concerns are addressed. Our study will investigate how gaps in delivery of fertility counseling may have an impact beyond meeting patients’ reproductive goals, by contributing to suboptimal cancer treatments for AYAs. While several small studies have partially assessed these issues in young women with breast cancer, they remain unstudied in AYAs with most other cancers. In this P01, we plan to survey approximately 5,000 AYA cancer survivors. For this Project, we will collect information on fertility concerns, receipt of fertility counseling, use of fertility preservation techniques, and factors that may influence use of fertility services. Survey participants will be AYA cancer patients 2–10 years after a cancer diagnosis from the University of North Carolina Cancer Information & Population Health Resource (CIPHR), Kaiser Permanente Northern California (KPNC), and Kaiser Permanente Southern California (KPSC). These settings provide the opportunity to link survey data with electronic health records or administrative claims data that document receipt of cancer treatment. This study will identify disparities in fertility counseling delivery and use of fertility preservation strategies, informing development of interventions to improve fertility-focused AYA care, including those that target patient and clinician comfort with the use of reproductive technologies. This project adds a critical element to our larger program addressing the unique challenges of AYA cancer patients transitioning from diagnosis to treatment to survivorship.