Fertility preservation in AYA oncology: Provider knowledge gaps, counseling practices, and barriers to care

Abstract Background: In the United States, nearly 90,000 adolescents and young adults (AYAs) aged 15–39 are diagnosed with cancer annually. Many receive gonadotoxic therapies (GTT) such as alkylating agents, radiation, or platinum-based chemotherapy, placing them at risk for impaired fertility (Irene et al, 2018; Micalczyk et al, 2021). Reproductive health is a critical quality-of-life domain for survivors, with infertility linked to increased depression, anxiety, and relationship strain (Lehmann et al, 2024). National guidelines recommend timely fertility preservation (FP) counseling and referrals before treatment, yet significant gaps remain, especially across age, race, and socioeconomic lines (Shnorhavorian et al, 2015; Meernik et al, 2023). While patient-level barriers are well documented, provider-level factors, such as knowledge, confidence, and perceived barriers, remain understudied. Objective: This study aimed to compare perceived versus actual knowledge of FP strategies among oncology providers caring for post-pubertal AYA patients receiving GTT. We hypothesized that providers would overestimate their knowledge. We also examined provider-reported practices related to counseling, referral, documentation, and barriers to FP care. Methods: We conducted a cross-sectional survey of oncology providers (attending and fellow physicians, and advanced practice providers (APPs)) at the University of Chicago who care for post-pubertal AYA patients with hematologic malignancies undergoing GTT. The survey assessed demographics, FP training, counseling and referral practices, and perceived barriers. Participants self-rated their FP knowledge and completed clinical vignettes aligned with national FP guidelines to assess applied knowledge. Knowledge scores were dichotomized by median and McNemar's test was used to compare perceived and actual knowledge. Results: Among 26 respondents, 81% identified as female; 54% were in adult oncology, 27% in pediatric oncology, and 19% in AYA oncology. Respondents included attendings (19%), fellows (38%), and APPs/other care team members (43%). Most (66%) reported that ≥ 25% of their patient population consists of AYAs. Over half (58%) had little or no FP training, and 53% rated the quality of FP education as poor or fair. Main sources of FP knowledge included scientific literature (65%), conference lectures (62%), and formal instruction (42%). Although providers reported comfort identifying GTT (58%), counseling male (66%) and female (54%) patients, and making FP referrals (73%), self-rated knowledge across FP methods was limited. Only 42% felt knowledgeable about oocyte cryopreservation, 31% about embryo cryopreservation, and 23% about ovarian tissue cryopreservation (OTC). While 58% felt knowledgeable about leuprolide for ovarian suppression therapy, vignette responses suggested potential overuse inconsistent with national guidelines. Among participants, 77% consistently asked about fertility importance, 61% incorporated fertility goals into treatment planning, 58% discussed treatment-related infertility risks, 62% made referrals when appropriate, 43% provided educational materials, and 73% documented FP conversations in the EMR. Commonly cited barriers included patient acuity (58%), affordability (27%), provider time constraints (27%), logistical challenges (23%), and patient reluctance to discuss FP (23%). There was no statistically significant difference between perceived and actual knowledge. Conclusions: Providers reported moderate comfort with FP counseling and referrals yet demonstrated limited knowledge on several FP procedures. Knowledge was particularly low for less common options, such as OTC. Most had little to no formal training, acquiring knowledge primarily through literature and lectures, highlighting the need for more interactive, hands-on learning opportunities. Despite reported comfort, important knowledge gaps persist. Key barriers to FP care included patient acuity, affordability, provider time constraints, and logistical systems, highlighting the need for both educational and structural interventions. The absence of a significant association between perceived and actual knowledge may reflect small sample size. Larger, multi-institutional studies are needed to better characterize these gaps. These findings serve as a preliminary needs assessment and support the development of targeted educational efforts and clinical protocols to improve FP care for AYA patients with cancer.