对于患有尿素循环障碍的人来说,成功过渡医疗保健的障碍
Farah A Ladha1, Cynthia Le Mons2, William J Craigen3
1School of Health Professions, Baylor College of Medicine, Houston, TX, USA; Texas Children's Hospital, Houston, TX, USA.
Molecular genetics and metabolism
|May 28, 2023
概括
尿素循环障碍 (UCD) 的儿童到成人医疗保健过渡 (HCT) 患者面临的准备和结果挑战. 特殊教育服务与较低的准备成绩相关,突出需要改善过渡支持.
科学领域:
- 儿科和成人医学 儿童和成人医学
- 遗传学和代谢障碍 遗传学和代谢障碍
- 医疗保健转型研究 研究 医疗保健转型研究
背景情况:
- 对于患有慢性病的人来说,儿科到成人医疗保健 (HCT) 的过渡至关重要.
- 过渡准备评估问卷 (TRAQ) 评估了HCT的准备程度,重点关注自主性和自我管理.
- 对于尿素循环障碍 (UCD) 患者的HCT经验存在有限的研究.
研究的目的:
- 调查父母/监护人对UCD儿童中HCT过程的看法.
- 在UCD患者中识别HCT准备和计划的障碍.
- 评估过渡结果,并确定UCD个体的HCT过程中的缺陷.
主要方法:
- 这项研究报告了父母/监护人对UCD儿童中HCT阶段和结果的看法.
- 使用过渡准备评估问卷 (TRAQ) 来评估HCT的准备.
- 与有和没有特殊教育服务的儿童之间的TRAQ分数进行比较.
主要成果:
- 接受特殊教育服务的儿童的TRAQ总分和特定领域的分数 (健康跟踪,提供者沟通,日常活动) 显着较低.
- 观察到显著缺乏HCT准备,大多数患者在26岁之前没有与提供者讨论HCT.
- HCT结果的缺陷包括UCD患者的延迟医疗护理和对医疗保健服务的不满.
结论:
- 患有UCD的个体在HCT准备方面遇到重大障碍,并面临过渡结果的缺陷.
- 特殊教育服务似乎是与较低的HCT准备度相关的一个因素.
- 建议包括个性化教育,过渡协调员,灵活的时间安排和加强症状识别教育,以在UCD患者中获得成功的HCT.
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