Fertility legislation and unmet needs: Exploring intervenable barriers for quality oncofertility care among adolescent and young adult cancer patients

PROJECT SUMMARY/ABSTRACT Curative cancer treatment modalities (e.g., chemotherapy) are gonadotoxic (i.e., destroy sperm and eggs) and frequently cause infertility. Thus, clinical practice guidelines intended to facilitate optimal oncofertility care indicate that oncologists should comprehensively discuss possible treatment-related infertility with all cancer patients of reproductive age. Such discussions are particularly relevant for adolescent and young adults (AYA; 15-39 years) with cancer who are in the prime of their reproductive years and endorse fertility-related distress following treatment, situating oncofertility as a priority research area for AYAs. Unfortunately, barriers to the implementation of guidelines compromise their effectiveness and AYAs are infrequently informed of fertility preservation options, with knowledge, cost, and insurance barriers hindering uptake of preservation among AYAs. The cancer care continuum is a multilayer system that describes a hierarchy of intervention levels that are influential in cancer care delivery. Oncofertility care is particularly amenable to intervention at various levels of influence (e.g., provider/team, organization/practice setting, health policy), as patient-, provider-, system-, and policy-level factors impact the delivery and uptake of optimal care. Thus, I aim to investigate oncofertility among AYAs by examining the multilevel influences of the cancer care continuum. Most existing AYA oncofertility research is focused on clinical samples (e.g., academic medical, comprehensive cancer centers) and on non-Hispanic white patients, limiting generalizability of findings, lacking ethnic and racial diversity, and likely not capturing the experiences of at-risk AYAs. To address these gaps, my dissertation (F99 Phase) will use SEER data to comprehensively examine oncofertility among a diverse, population-based sample of AYAs to improve external validity and capture the care experiences of the underlying population. I will gain an understanding of (F99 Training Goal 1) clinical considerations of fertility issues, (2) quantitative analysis of cancer registry data, and (3) qualitative research methods to (F99 Aim 1.1) examine sociodemographic and (Aim 1.2) healthcare correlates of AYAs’ fertility experiences (fertility discussion, preservation, family planning, reproductive concern) and will (Aim 1.3) explore barriers/facilitators to delivering guideline-concordant fertility discussions for AYAs among providers. To examine environmental influences on oncofertility care, (K00 Phase) I will seek a postdoctoral position to study (K00 Training goal 1) implementation science and intervention research and (2) health policy to examine (K00 Aim 2.1) provider perceptions and perceived actionability of fertility guidelines and (Aim 2.2) insurer adherence to legislative mandates and barriers to coverage for preservation. AYAs should receive equitable and guideline- concordant care to improve reproductive outcomes. Therefore, understanding the multilevel influences impacting oncofertility is critical to develop actionable, evidence-based interventions that improve care and ensure AYAs are not disproportionately affected by their cancer experience.