PDF(Pubmed)
Abstract：
Clinical decision-making for individuals with 46,XY disorders/differences of sex development (DSD) remains unsettled and controversial. The North American DSD Clinician Survey examines the recommendations of a large group of clinical specialists over the last two decades. Active members of the (Lawson Wilkins) Pediatric Endocrine Society and the Societies for Pediatric Urology were invited to respond to a web-based survey at three different timepoints: 2003-2004 (T1), 2010-2011 (T2), and 2019-2020 (T3). Data from 429 participants in T1, 435 in T2, and 264 in T3 were included in this study. The participants were presented with three XY newborn clinical case scenarios-micropenis, partial androgen insensitivity syndrome, and iatrogenic penile ablation-and asked for clinical management recommendations. The main outcomes assessed included the recommended gender of rearing, surgical decision-maker (parent or patient), timing of genital surgery, and age at which to disclose medical details and surgical history to the patient. For all scenarios, the overwhelming majority recommended rearing as male, including a significant increase across timepoints in those recommending a male gender of rearing for the infant with penile ablation. The proportions recommending female gender of rearing declined significantly across timepoints. In general, most recommended parents (in consultation with the physician) serve as surgical decision-makers, but these proportions declined significantly across timepoints. Recommendations on the timing of surgery varied based on the patient\'s gender and type of surgery. There has been a shift in recommendations away from the \"optimal gender policy\" regarding gender of rearing and surgical interventions for patients with XY DSD.
摘要：
46，XY疾病/性发育差异（DSD）患者的临床决策仍未解决且存在争议。北美DSD临床医生调查检查了过去二十年来一大批临床专家的建议。（LawsonWilkins）儿科内分泌学会和儿科泌尿外科学会的活跃成员应邀在三个不同的时间点对基于网络的调查做出回应：2003-2004（T1），2010-2011（T2），和2019-2020（T3）。这项研究包括T1的429名参与者，T2的435名参与者和T3的264名参与者的数据。向参与者展示了三个XY新生儿临床病例-微阴茎，部分雄激素不敏感综合征，和医源性阴茎消融-并要求临床治疗建议。评估的主要结果包括建议的养育性别，手术决策者（父母或患者），生殖器手术的时机,以及向患者披露医疗细节和手术史的年龄。对于所有场景，绝大多数人建议以男性身份饲养，包括建议男性为阴茎消融婴儿养育的人在各个时间点的显着增加。在各个时间点，推荐女性养育的比例显着下降。总的来说,最推荐的父母（与医生协商）作为手术决策者，但这些比例在各个时间点显著下降.关于手术时机的建议因患者的性别和手术类型而异。关于XYDSD患者的养育和手术干预的性别，建议已从“最佳性别政策”转变。
