Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives.
Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives.
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护理报告、临床观察和诊断评估表明，大多数脆性X综合征患者都经历了高水平的慢性焦虑。然而，焦虑是FXS结果测量的一个具有挑战性的终点，因为大多数人无法可靠地报告内部情绪或身体状态。由456名年龄2-81岁的FXS患者（87名女性，369名男性）和24名女性和2名男性年龄15-66岁的FXS自我倡导者的照顾者完成了一项关于焦虑相关症状和问题的存在、频率和持续时间的全面调查，以引出开放式回答。护理人员报告了焦虑的经典行为指标，如回避，易怒，运动激动和生理症状，以及FXS中的行为特征，如重复行为，攻击和自伤。自我倡导者的帐户主要是照顾者的数据。因子分析产生了四个因子：（1）易怒、攻击性和自伤增加;（2）身体运动、神经活动和不安增加;（3）焦虑的身体和生理特征;（4）内化和胃肠道症状。护理人员能够观察和报告行为，这些行为是焦虑状态的有效指标，通常在自我报告的标准化评估中报告。这些结果支持FXS的焦虑测量的发展，最大限度地减少评分员推理的问题。
Caregiver reports, clinical observations, and diagnostic assessments indicate that most individuals with fragile X syndrome experience high levels of chronic anxiety. However, anxiety is a challenging endpoint for outcome measurement in FXS because most individuals cannot reliably report internal emotional or body states. A comprehensive survey of the presence, frequency, and duration of anxiety-related symptoms and questions to elicit open-ended responses was completed by caregivers of 456 individuals with FXS, ages 2–81 years (87 female, 369 male) and 24 female and 2 male FXS self-advocates ages 15–66 years. Caregivers reported classic behavioral indicators of anxiety, such as avoidance, irritability, motor agitation, and physiological symptoms, as well as behavioral features in FXS such as repetitive behavior, aggression, and self-injury. Self-advocate accounts largely paralleled caregiver data. Factor analyses yielded four factors: (1) increased irritability, aggression, and self-injury; (2) increased physical movement, nervous activity, and restlessness; (3) physical and physiological features of anxiety; and (4) internalizing and gastrointestinal symptoms. Caregivers are capable of observing and reporting behaviors that are valid indicators of anxious states that are usually reported in self-report standardized assessments. These results support the development of an anxiety measure for FXS that minimizes problems with rater inference.
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DOI：
10.1080/10705519909540118
发表时间：
1999-01-01
影响因子：
6
作者：
Hu, Li-tze;Bentler, Peter M.
通讯作者：
Bentler, Peter M.
DOI：
10.1352/1944.7558-118.6.475
发表时间：
2013-11-01
影响因子：
2.1
作者：
Klusek, Jessica;Martin, Gary E.;Losh, Molly
通讯作者：
Losh, Molly
DOI：
10.1097/01.chi.0000046892.27264.1a
发表时间：
2003-08-01
影响因子：
13.3
作者：
Dekker, MC;Koot, HM
通讯作者：
Koot, HM
影响因子：
5.4
作者：
O'Connor, Cliodhna;Joffe, Helene
通讯作者：
Joffe, Helene
影响因子：
1.3
作者：
Cordeiro, Lisa;Abucayan, Floridette;Hessl, David
通讯作者：
Hessl, David