照顾性发展差异的儿童和青少年的挑战
Gabby Atlas1,2,3, Chloe Hanna1,2,3, Tiong Yang Tan1,2,3,4
1Murdoch Children's Research Institute, Parkville, Victoria, Australia.
Clinical endocrinology
|January 14, 2025
概括
目前澳大利亚和新西兰的性别发展差异 (DSD) 护理模式缺乏,基本的心理社会支持服务存在重大差距. 需要进一步探索,以解决DSD护理中的这些障碍.
科学领域:
- 内分泌学 在内分泌学.
- 遗传学 是一个遗传学.
- 儿科 儿科 儿科
背景情况:
- 对性别发育差异 (DSD) 患者的最佳护理模式正在发展.
- 在全球范围内提出了多种护理模式.
- 了解澳大利亚和新西兰目前的做法至关重要.
研究的目的:
- 调查目前在澳大利亚和新西兰的DSD护理模式.
- 识别临床医生在DSD管理中的缺口和障碍.
- 为改善DSD医疗保健服务提供提供信息.
主要方法:
- 使用研究电子数据捕获 (REDCap) 进行了一项横截面的匿名在线调查.
- 在澳大利亚和新西兰招募了参与DSD诊断和管理的临床医生.
- 调查主题包括受访者人口统计,术语,多学科团队 (MDT) 组成和数据库可用性.
主要成果:
- 63名临床医生完成了调查,代表所有澳大利亚州和地区以及新西兰.
- 31%的参与者没有参加DSD MDT会议.
- 75%的受访者发现了当前DSD护理的障碍,显着缺乏心理支持 (只有20%的MDT,70%的需求).
结论:
- 在澳大利亚和新西兰的DSD护理中存在显著的差距和障碍.
- 目前的DSD护理模式不符合国际建议,特别是关于心理社会支持.
- 需要进一步的研究来了解和解决这些服务赤字背后的原因.
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