评估具有性别发育差异人士的健康相关管理。
Assessing the health-related management of people with differences of sex development.
机构信息
Division of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany.
Institute for Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany.
出版信息
Endocrine. 2021 Mar;71(3):675-680. doi: 10.1007/s12020-021-02627-y. Epub 2021 Jan 30.
PURPOSE
Health care requirements and perception of people with differences of sex development (DSD) have changed enormously since the "Chicago Consensus Conference" in 2005. Therefore, new standards of care and evaluation of care have to be developed.
METHODS
We summarize the social and legal approach to care for DSD during the last two decades and report the main results of European research activities.
RESULTS
The last two decades were accompanied by legal and societal discussion regarding how to deal with a nonbinary concept of sex. This leads to the necessity to assess health care requirements for individuals with DSD in an objective manner. We briefly review the results of the recently funded European research projects dealing with health-related issues in DSD like EU COST Action DSD, I-DSD, and dsd-LIFE, and address the compilation of quality indicators that will be needed to benchmark health care provision and health care-related outcomes.
CONCLUSIONS
The benchmarking process has to be implemented among health care providers for individuals with DSD within the European Reference Networks for Rare Conditions.
目的
自 2005 年“芝加哥共识会议”以来，性发育差异（DSD）患者的医疗需求和认知发生了巨大变化。因此，必须制定新的护理标准和评估护理标准。
方法
我们总结了过去二十年中 DSD 护理的社会和法律方法，并报告了欧洲研究活动的主要结果。
结果
过去二十年伴随着关于如何处理非二元性别概念的法律和社会讨论。这导致需要客观评估 DSD 个体的医疗保健需求。我们简要回顾了最近资助的欧洲研究项目的结果，这些项目涉及 DSD 相关的健康问题，如欧盟 COST 行动 DSD、I-DSD 和 dsd-LIFE，并讨论了编制质量指标的必要性，这些指标将用于基准医疗保健提供和与医疗保健相关的结果。
结论
在欧洲罕见病参考网络中，必须在为 DSD 个体提供医疗保健的医疗保健提供者之间实施基准化过程。
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