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结节性硬化症患儿的行为问题与父母压力

Behavior problems in children with tuberous sclerosis complex and parental stress.

作者信息

Kopp Claudine M C, Muzykewicz David A, Staley Brigid A, Thiele Elizabeth A, Pulsifer Margaret B

机构信息

Department of Neurology, Massachusetts General Hospital, Boston, MA 02114, USA.

出版信息

Epilepsy Behav. 2008 Oct;13(3):505-10. doi: 10.1016/j.yebeh.2008.05.010. Epub 2008 Jul 7.

Abstract

Behavioral problems are common in children with tuberous sclerosis complex (TSC) and can be challenging to manage at home. Standardized measures were used to assess behavior in 99 pediatric patients with TSC and to evaluate parenting stress in their parents. About 40% of the pediatric patients presented clinically significant behavioral problems, most frequently involving symptoms of autism spectrum disorder, inattention, and hyperactivity. Higher seizure frequency, mixed seizure disorder, and low intellectual functioning placed the patient at significant risk for behavior problems. Almost 50% of participating parents reported experiencing clinically significant parenting stress, which was associated with specific characteristics of the child, including the presence of current seizures, a history of psychiatric diagnosis, low intelligence, and behavioral problems. Clinicians should be aware that behavioral problems are prominent in children with TSC. Referrals for behavioral intervention and monitoring of parental stress should be included in the medical management of children with TSC.

摘要

行为问题在结节性硬化症(TSC)患儿中很常见,在家中管理起来可能具有挑战性。采用标准化措施评估了99例TSC儿科患者的行为,并评估了其父母的育儿压力。约40%的儿科患者存在具有临床意义的行为问题,最常见的是自闭症谱系障碍、注意力不集中和多动症状。癫痫发作频率较高、混合型癫痫障碍以及智力功能低下使患者出现行为问题的风险显著增加。近50%的参与研究的父母报告称经历了具有临床意义的育儿压力,这与孩子的特定特征有关,包括当前癫痫发作、精神科诊断史、低智力和行为问题。临床医生应意识到行为问题在TSC患儿中很突出。对TSC患儿的医疗管理应包括转介进行行为干预和监测父母压力。

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