(P 07) IDENTIFYING CONCERNS OF ADOLESCENT AND YOUNG ADULT SARCOMA PATIENTS AND SURVIVORS FOLLOWING FERTIITY PRESERVATION

Objective: The risk of infertility in the adolescent and young adult (AYA) sarcoma population is recognized by oncology providers. As such, validated measures have been developed and adopted by many practices to better assess cancer-related reproductive concerns and meet the needs of AYA oncology patients, including access to fertility preservation (FP). However, less is known about the needs of such patients following FP, as the AYA group spans a wide age spectrum with many pursuing FP well before they consider parenthood. The aim of this study was to better elucidate the concerns of AYA sarcoma patients post-FP to inform current oncofertility practices.

Methods: AYA cancer patients (n=27) aged 12-25 years whose treatment conferred a risk of infertility were recruited through electronic health record query. Participants over 18 years were emailed or mailed copies of informed consent documents. Guardian consent/minor assent were sent to participants below the age of 18. Interviews consisted of administration of a battery of standardized instruments followed by a semi-structured interview via HIPAA-approved confidential video-conferencing software, or in person. Interviews were comprised of three sections (general cancer experience, goals and dreams for the future, experiences with FP). The local Institutional Review Board approved this overall study entitled “Understanding adolescent and young adult cancer patient utilization of and preferences for clinical fertility preservation and reproductive health services.” Authors deductively coded interviews for themes related to information needs, knowledge of treatment effects on fertility, and reproductive concerns. 27 total participants were identified with7 participants having a diagnosis of sarcoma. Emergent, inductive themes related to post-FP concerns were identified from their interviews.

Results: 7 participants (3F, 4M) had a diagnosis of sarcoma (3 with synovial sarcoma, 3 with osteosarcoma and 1 with malignant peripheral nerve sheath tumor). Mean age of sarcoma participants was 18.3 years (range 13-24). All 7 patients attempted fertility preservation (6/7 successful) compared to 17/27 (64%) total participants who pursued FP. Uncertainty about family planning, feelings of precocity or forced maturity and concerns regarding future relationships emerged as common themes. Some participants expressed their struggle in accepting the unknown in terms of their ability to naturally reproduce. Others remarked that their sarcoma diagnosis mandated discussions regarding fertility that their peers could not appreciate. Similarly, some felt that they were too young to consider FP and this concern was present in participants of varied ages (16-, 20-, 22- and 24-year-old participants). Multiple participants worried that the risk of infertility and their history of FP would complicate future romantic relationships.

Conclusion: AYA sarcoma patients are receptive to discussions regarding infertility risk and in this single-institution study, they do employ FP strategies at a rate higher than their peers. However, following even successful FP, fertility-related concerns persist and in exploring these themes, opportunities to strengthen current AYA oncofertility practices emerge. The themes identified in this study suggest a benefit to long-term AYA oncofertility-specific peer programs to provide both practical advice and emotional support Peer support programs in the AYA oncofertility space often emphasize FP options and associated risks and benefits. Encouraging AYA oncology patients in the survivorship setting to engage in such groups and share their experiences of FP and beyond would be beneficial as well. Similarly, current educational efforts regarding FP focuses on the decision-making process and logistics. Developing post-FP educational materials that target patients and families as well as providers of survivorship would bridge the gap between the time of FP and the time of family planning for many AYA sarcoma patients.