Are guidelines guiding? A mixed methods study examining the integration of ASCO fertility discussion guidelines in practice among oncologists and adolescents and young adults at an NCI-designated Comprehensive Cancer Center.

Abstract

Purpose: This study aims to explore the integration of American Society of Clinical Oncology (ASCO) guidelines for fertility discussion in clinical practice.

Methods: A concurrent triangulation mixed methods design was used. We recruited oncologists from an NCI-designated Comprehensive Cancer Center who treat adolescents and young adults (AYAs) at risk for infertility to participate in a semi-structured qualitative interview and conducted a thematic analysis. Simultaneously, self-report fertility-related data were collected from AYAs (age 18-39) diagnosed at the same institution via self-report survey and were analyzed using descriptive statistics.

Results: Themes reported by oncologists (N = 12; 66.7% female, on average in practice for 14.3 years) included a lack of oncofertility-related training and limited knowledge surrounding fertility discussion guidelines. Those who were aware of guidelines stated that they informed their discussions. Oncologists' perceptions of fertility discussion guidelines were largely positive, though reservations were expressed. Discussions were primarily informed by patient needs and research/literature, but seldom by oncologists' explicit training or experience in oncofertility. Among AYAs (N = 58; 53.5% female, 35.1% Hispanic, on average 32.0 years at diagnosis), 82.3% had a fertility discussion, 62.6% of which occurred with their oncologist. Fertility discussions occurred at some visits (66.7%), and AYAs were very (39.4%) or moderately (27.3%) satisfied with counseling received. Components of ASCO guidelines most often discussed were the timing of preservation and consideration of individual factors in fertility preservation (66.7% each). Patient advocacy resources (33.3%) and informing them that their cancer history does not increase risk of cancer or birth defects in a child (30.3%) were least often discussed.

Conclusion: Awareness of fertility discussion guidelines among oncologists was low, and more than half of AYAs reported only two components of ASCO guidelines were included in fertility discussions with their oncologists. Despite this, AYAs' overall satisfaction with discussions was moderate to high, suggesting adherence to all guideline components may not be necessary for AYAs to derive benefit. While oncologists reported largely positive perceptions of fertility discussion guidelines, several shared that the guidelines themselves may hinder implementation if they do not capture diverse patient scenarios and/or are outdated.

Implications for cancer survivors: Findings suggest a need to improve oncologists' knowledge surrounding guidelines, refine recommendations to optimize oncofertility counseling, and subsequently improve their integration in practice to ensure AYAs are provided with desired and actionable information to support goal-concordant reproductive decisions.