目的:几十年来,性别特征(VSC)变异的患者一直得不到足够的治疗。2006年芝加哥共识声明旨在引入改进的全面护理,其中包括由多学科小组组织的从儿科到成人服务的护理过渡。然而,过渡性护理的证据很少.本文的目的是概述为患有VSC的青少年和年轻成年人提供护理的过渡。
方法:由中央的护理团队与医疗保健专业人员和同伴支持小组进行了七个焦点小组,北方,和西欧。使用反身主题分析检查了焦点组的数据。
结果:尽管在过去的二十年中已经实施了护理过渡,它仍然不足。各国之间存在差异,因为护理质量取决于可用资源和性别特征的变化。此外,护理的适当过渡存在重大障碍,因为缺乏时间和资金。缺乏成人护理提供者和社会心理支持通常会使拥有VSC的年轻人独自驾驭医疗保健系统。
结论:研究结果表明,护理过渡是通过儿科内分泌科组织的。由于资源和性别特征的差异,护理质量有所不同。缺乏成人专家,尤其是社会心理支持,这是年轻人和成年人在导航医疗保健系统和改善向成年人提供医疗保健方面的最大障碍。有再次创伤的风险,因为青少年和年轻人必须经常重复他们的病史和教育成人护理提供者没有足够的培训和知识。
OBJECTIVE: People with variations in sex characteristics (VSCs) have been receiving inadequate care for many decades. The Chicago consensus statement in 2006 aimed to introduce improved comprehensive care, which would include the transition of care from pediatric to adult services organized by multidisciplinary teams. Yet, the evidence for transitional care is scarce. The aim of this paper is to outline the delivery of transition of care for adolescents and young adults with VSCs.
METHODS: Seven focus groups were conducted with health care professionals and peer support groups by care teams in Central, Northern, and Western Europe. The data from the focus groups were examined using reflexive thematic analysis.
RESULTS: Even though the transition of care has been implemented in the last two decades, it remains inadequate. There are differences among countries, as the quality of care depends on available resources and variations in sex characteristics. Moreover, there are significant
hurdles to adequate transition of care, as there is lack of time and funding. The lack of adult care providers and psychosocial support often leaves young adults with VSCs to navigate the health care system alone.
CONCLUSIONS: The outcome of the study shows that the transition of care is organized through the department of pediatric endocrinology. The quality of care varies due to resources and variations in sex characteristics. A lack of adult specialists, and especially psychosocial support, represents the biggest obstacle for young adults and adults in navigating the health care system and for improvements in the provision of health care to adults. There is a risk of re-traumatization, as adolescents and young adults must often repeat their medical history and educate adult care providers who are insufficiently trained and knowledgeable.