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 pediatric endocrinologists’ 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 of providers reported discussing fertility implications of TS routinely in pediatric care. Fifty-six percent of providers 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: Providers report inconsistently discussing fertility implications of TS. The frequency of referral to a 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.


中文翻译：

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儿科内分泌门诊特纳综合征患者的生育咨询实践：儿科内分泌学会调查结果

简介：特纳综合征 (TS) 与原发性卵巢功能不全的高风险相关。目前的指南建议对受影响的青年及其家人进行早期生育咨询。本研究评估了儿科内分泌学家对 TS 女孩的生育咨询实践。方法：邀请 TS 提供者通过儿科内分泌学会 listserv 完成一项调查。描述性统计总结了感兴趣的变量。相关性用于确定障碍/实践特征与生育力保存 (FP) 转诊之间的关联。主题分析用于检验定性反应。结果：119 家提供者完成了调查。70% 的提供者报告说在儿科护理中经常讨论 TS 对生育的影响。56% 的提供者报告说经常或总是将有自发性月经初潮的患者转诊给 FP 专家，而只有 19% 的人报告说经常或总是将他们的患者转诊给没有自发性初潮的患者 (p<0.001)。与 FP 转诊频率相关的障碍包括不熟悉 FP 选项、认为 FP 不是他们患者的可能目标以及当地没有生殖内分泌学家。定性地，确定了四个转诊障碍主题：(1) 转诊效用有问题，(2) 患者/家属缺乏兴趣，(3) 提供者障碍（例如缺乏知识），(4) 后勤/结构​​性障碍与生育相关的护理。讨论/结论：提供者报告不一致地讨论了 TS 的生育影响。转介给 FP 专家的频率和影响转介决定的因素/障碍仍然可变。未来的研究应侧重于扩大提供者教育，解决 TS 患者获得高质量生育咨询和转诊的障碍，以及调查 TS 中的 FP 结果。