Search

Introduction: Turner syndrome (TS) is associated with a high risk of primary ovarian insufficiency. Current guidelines recommend early fertility counseling for affected youth and their families. This study assessed clinical providers’ (MD, NP, or PA) fertility counseling practices for girls with TS. Methods: TS providers were invited to complete a survey via the Pediatric Endocrine Society listserv. Descriptive statistics summarized variables of interest. Correlations were used to identify associations between barriers/practice characteristics and fertility preservation (FP) referral. Thematic analysis was used to examine qualitative responses. Results: 119 providers completed the survey. Seventy percent reported discussing fertility implications of TS routinely in pediatric care. Fifty-six percent reported often or always referring patients with spontaneous menarche to FP specialists, whereas only 19% reported often or always referring their patients without spontaneous menarche (p < 0.001). Barriers associated with FP referral frequency included unfamiliarity with FP options, belief that FP is not a possible goal for their patients, and absence of a local reproductive endocrinologist. Qualitatively, four referral barrier themes were identified: (1) questionable utility of referral, (2) lack of perceived interest among patients/families, (3) provider barriers (e.g., lack of knowledge), (4) logistical/structural barriers to accessing fertility-related care. Discussion/Conclusion: Pediatric endocrinology providers report inconsistently discussing fertility implications of TS. The frequency of referral to an FP specialist and factors/barriers affecting the decision to refer remain variable. Future research should focus on expanding provider education, addressing barriers to high-quality fertility counseling and referral for patients with TS, and investigating FP outcomes in TS.

Many childhood cancer survivors desire biological children but are at risk for infertility after treatment. One option for mitigating risk is the use of fertility preservation prior to gonadotoxic therapy. Adolescents and emerging adults may rely on their parents to help them decide whether to use fertility preservation. While this is often a collaborative process, it is currently unknown how parents can optimally support adolescents and emerging adults through this decision. To address this gap, we developed a family-centered, psychoeducational intervention to prompt adolescents and emerging adults to reflect on their future parenthood goals and attitudes towards fertility preservation, as well as to prompt their parents (or other caregivers) to reflect on their own and their child’s perspectives on the topic. In this randomized controlled trial, families will be randomized to either the standard of care control group (fertility consult) or the intervention group. After their fertility consult, adolescents and emerging adults and parents in the intervention group will complete a fertility preservation values clarification tool and then participate in a guided conversation about their responses and the fertility preservation decision. The primary expected outcome of this study is that participation in the intervention will increase the use of fertility preservation. The secondary expected outcome is an improvement in decision quality. Chi-square analyses and t-tests will evaluate primary and secondary outcomes. The goal of this intervention is to optimize family-centered fertility preservation decision-making in the context of a new cancer diagnosis to help male adolescents and emerging adults achieve their future parenthood goals.

BACKGROUND: Approximately half of male childhood cancer survivors experience fertility impairment, which can cause psychological distress. Sperm banking remains underutilized among adolescent males with cancer. Parent recommendation influences banking decisions, yet multi-informant studies have not been conducted to examine fertility preservation (FP) communication and decision-making in this population. This study explored FP-communication among mothers, fathers, and their male adolescents newly diagnosed with cancer. PROCEDURE: Thirty-three male adolescents, 32 mothers, and 22 fathers completed semi-structured interviews one-to-two-months after cancer diagnosis addressing this question: Tell me more about conversations you had about fertility preservation/sperm banking with your health care providers, parents/son, other family members, or anyone else. Interviews were audio-recorded and transcribed verbatim for thematic content analysis. RESULTS: Five process themes emerged: (1) reliance on healthcare team and social support networks to facilitate FP decisions (only parents); (2) withholding parental opinion and deferring the decision to the adolescent; (3) ease of communication (primarily adolescents); (4) communication barriers/facilitators; (5) not being present or not remembering details of FP conversations with healthcare providers (primarily fathers and adolescents). Four content themes included: (1) preference for biological (grand)parenthood; (2) consideration of adolescent’s future partner’s desire for biological parenthood (primarily parents); (3) banking while it is a viable option; (4) openness to alternative parenthood options (e.g.,adoption/fostering, primary parents). CONCLUSIONS: Understanding variation in what family members discuss and consider relevant when making FP decisions is an important step towards improving pediatric oncofertility care. Interventions are needed to facilitate family FP-related conversations and optimize decisional satisfaction over time.