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自我报告量化结核性硬化症复杂相关神经精神疾病检查清单 (TAND-SQ) 的开发和可行性

Tosca-Marie Heunis¹, Nola Chambers², Stephanie Vanclooster¹

¹Department of Public Health, Mental Health and Wellbeing Research Group, Vrije Universiteit Brussel, Brussels, Belgium.

Pediatric neurology

|August 20, 2023

概括

一个新的结核硬化复杂关联神经精神疾病 (TAND) 自报量化检查清单 (TAND-SQ) 已为TSC患者及其照顾者开发. 该工具旨在改善TAND困难的识别和量化,解决未满足的临床需求.

科学领域:

神经科学是一个神经科学.
遗传学遗传学是一个
精神病学是一个精神病学.

背景情况:

结核性硬化综合体相关的神经精神疾病 (TAND) 在结核性硬化综合体 (TSC) 患者中经常被低诊断和治疗.
现有的临床医生完成的工具,如TAND终身检查清单 (TAND-L),在自我报告和量化方面存在局限性.
利益相关者的意见强调了需要一个护理人员或患者填写的TAND检查清单,以量化困难.

研究的目的:

开发一个自我报告量化TAND检查清单 (TAND-SQ).
对开发的TAND-SQ检查清单进行可行性和可接受性测试.

主要方法:

该研究涉及三个阶段:TAND-SQ清单开发,可行性/可接受性测试和最终确定.
技术专家 (n=23) 参与了所有阶段.
现生专家,包括护理人员和TSC患者 (n=58),参与了可行性和可接受性测试.

主要成果:

与TAND-L相比,TAND-SQ检查清单包含了四个新项目和一个量化评级.
"近期"的TAND-SQ检查清单在全面性,清晰性,易用性和整体可接受性方面获得了很高的评分.
最终版本包括关于优势,战略和TAND集群概况的问题.

结论:

现在可以使用TAND-SQ检查清单,供TSC患者及其照顾者使用.
未来的步骤包括验证TAND-SQ并集成到智能手机应用程序中,将TAND集群配置文件与治疗建议联系起来.

关键词:

可接受性可接受性可行性可行性自我报告自我报告利益相关者参与利益相关者参与坦德·坦德是什么意思坦德检查清单检查清单与TSC相关的神经精神疾病.结核性硬化综合体结核性硬化综合体

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