为 46 XY DSD 患者提供多学科护理的模式。
A model of delivering multi-disciplinary care to people with 46 XY DSD.
机构信息
Pediatric Urology, University of Oklahoma Health Sciences Center, Oklahoma City, OK 73104, USA.
出版信息
J Pediatr Urol. 2012 Feb;8(1):7-16. doi: 10.1016/j.jpurol.2011.08.013. Epub 2011 Nov 9.
In 2006, a consensus statement was jointly produced by the Lawson Wilkins Pediatric Endocrine Society (LWPES) and the European Society of Paediatric Endocrinology (ESPE) concerning the management of disorders of sex development (DSD) [1]. A recommendation provided by this consensus was that evaluation and long-term care for people affected by DSD should be performed at medical centers with multi-disciplinary teams experienced in such conditions. Here we provide our team's interpretation of the 2006 consensus statement recommendations and its translation into a clinical protocol for individuals affected by 46 XY DSD with either female, or ambiguous, genitalia at birth. Options for medical and surgical management, transitioning of care, and the use of mental health services and peer support groups are discussed. Finally, we provide preliminary data to support the application of our model for delivering multi-disciplinary care and support to patients and their families.
2006 年， Lawson Wilkins 儿科内分泌学会（LWPES）和欧洲儿科内分泌学会（ESPE）联合发布了一份关于性发育障碍（DSD）管理的共识声明[1]。该共识建议，对患有 DSD 的人群的评估和长期护理应由在多学科团队方面经验丰富的医疗中心提供，这些团队在这种情况下有经验。在这里，我们对 2006 年共识声明建议进行了解读，并将其翻译成针对出生时具有女性或模糊外生殖器的 46 XY DSD 个体的临床方案。讨论了医疗和手术管理、护理过渡、心理健康服务和同伴支持小组的使用等选项。最后，我们提供了初步数据，以支持我们为患者及其家属提供多学科护理和支持的模型的应用。
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