特纳综合征:皮肤,肝脏,眼睛,牙和耳,耳,耳,耳,耳的评估应该得到改进
Jenny Lam1, Sophie Stoppa-Vaucher2,3, Maria Cristina Antoniou3
1Faculty of Biology and Medicine, University of Lausanne, Lausanne, Switzerland.
Frontiers in endocrinology
|August 10, 2023
概括
图纳综合征护理指南显示,2017年之后的随访率有所改善,但牙科和眼科评估等关键领域需要加强,以获得更好的患者结果.
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:
- 特纳综合征 (TS) 与多器官并发症有关,需要勤奋的随访.
- 有效实施国际护理指南对于管理TS患者至关重要.
研究的目的:
- 根据2007年和2017年的国际指导方针,评估对特纳综合征患者护理的充分性.
- 描述TS患者队列中的临床表型和随访坚持.
主要方法:
- 一项多中心回顾性描述性队列研究包括68名在18岁之前被诊断患有特纳综合征的患者.
- 根据根据上次访问日期,对18个 (2007年指导方针) 和19个 (2017年指导方针) 适合年龄的建议进行了评估.
- 收集的数据包括生长,青春期状态,并发症,治疗和型.
主要成果:
- 在2017年之前,对建议的总体遵守率为68.9%,在2017年之后为78.5%.
- 对于身高,体重,BMI,心脏和脏成像观察到高坚持.
- 耳鼻喉 (ENT),皮肤,牙科,眼科和胆固醇评估的坚持率较低.
结论:
- 虽然成长和主要器官成像随访通常是充足的,但在牙科,耳鼻,眼科,皮肤和胆固醇病监测方面存在重大差距.
- 在2017年之后,对特纳综合征护理指南的遵守得到了改善,特别是对成年人护理的更好的过渡.
- 需要对特定评估进行有针对性的改进,以优化对特纳综合征患者的综合护理.
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