Quality of Life of Pediatric Patients With Long QT Syndrome
Quality of Life of Pediatric Patients With Long QT Syndrome
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DOI：
10.1016/j.amjcard.2015.11.051
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发表时间：
2016-02-15
影响因子：
2.8
通讯作者：
Marino, Bradley S.
中科院分区：
文献类型：
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作者：
Czosek, Richard J.;Kaltman, Jonathan R.;Marino, Bradley S.
患有长QT综合征（LQTS）的儿童有猝死的危险，活动受限，需要每日用药。我们试图评估患者及其父母对LQTS患者的生活质量（QOL）、自我感知和行为，并确定较低生活质量的预测因素。QOL（儿科QOL量表[PedsQL]和儿科心脏生活质量量表[PCQLI]）、自我认知和行为量表由LQTS患者及其父母完成。使用t检验将PedsQL评分与已发表的健康儿童数据进行比较；比较不同复杂程度先天性心脏病患者的PCQLI评分。采用混合模型进行多变量分析。对61例LQTS患者进行评估（年龄13.6±3.0岁，男性49%）。与健康儿童相比，LQTS和父母代理报告患者的PedsQL总分、社会心理和身体健康总结评分显著低于双尖瓣主动脉瓣患者（p = 0.2）
Children with long QT syndrome (LQTS) live with the risk of sudden death, activity restrictions, and the need for daily medications. We sought to evaluate the quality of life (QOL), self-perception, and behavior of patients with LQTS as perceived by both patients and their parents and identify predictors of lower QOL. QOL (Pediatric QOL Inventory [PedsQL] and Pediatric Cardiac Quality of Life Inventory [PCQLI]), self-perception, and behavioral inventories were completed by patients with LQTS and their parents. Comparison of PedsQL scores was made to published data for healthy children using t tests; and PCQLI scores were compared with those of patients with differing complexity of congenital heart disease. Mixed modeling was used for multivariable analysis. Sixty-one patients with LQTS were evaluated (age 13.6 +/- 3.0 years; male 49%). Compared with healthy children, the PedsQL Total, Psychosocial, and Physical Health Summary scores were significantly lower for patients with LQTS and parent proxy reports (p = 0.2), lower than those of patients with bicuspid aortic valve (p