自报量化结核硬化复杂相关神经精神疾病检查清单 (TAND-SQ) 的验证
Nola Chambers1, Tosca-Marie Heunis2, Sugnet Gardner-Lubbe3
1Centre for Autism Research in Africa (CARA), Division of Child and Adolescent Psychiatry, University of Cape Town, 46 Sawkins Road, Rondebosch, Cape Town, 7700, South Africa. nola.chambers@uct.ac.za.
Orphanet journal of rare diseases
|June 13, 2025
概括
在TAND-SQ检查清单可靠地测量结核性硬化症复杂关联神经精神疾病 (TAND) 严重程度在TSC的个体. 这种经过验证的工具有助于临床决策和TAND管理的研究.
科学领域:
- 神经科学是一个神经科学.
- 遗传学 是一个遗传学.
- 临床心理学 临床心理学
背景情况:
- 结核性硬化综合体 (TSC) 是一种罕见的遗传疾病,导致良性生长.
- 与TSC相关的神经精神疾病 (TAND) 很普遍,但在临床上服务不足.
- "TAND-SQ检查清单"可以自行报告和量化TAND特征.
研究的目的:
- 评估TAND-SQ检查清单得分的可靠性和有效性.
- 评估集群评分 (CS),集群严重性评分 (CSS) 和总TAND严重性评分 (TTSS).
主要方法:
- 采用了一种描述性的组设计.
- 从TSC联盟自然历史数据库和发育突触协会RDCRN研究中招募了两个方便样本 (n=92).
主要成果:
- 在TAND-SQ检查清单中,CS和CSS的内部一致性很好.
- CS和CSS与临床诊断和标准化的行为测量有显著的相关性.
- TTSS平均与全球对TAND负担,适应性行为和情绪/行为困难的评级有很强的相关性.
结论:
- 这些发现支持TAND-SQ检查清单的CS,CSS平均值和TTSS平均值的可靠性和有效性.
- 该TAND-SQ检查清单适用于TAND管理中的临床决策.
- 检查清单可以在未来对TAND的研究中使用.
相关概念视频
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These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
180


