Quality of life among children with velocardiofacial syndrome.
Quality of life among children with velocardiofacial syndrome.
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DOI：
10.1597/09-009.1
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发表时间：
2010-05
期刊：
影响因子：
--
通讯作者：
O'Conner-Von SK
中科院分区：
文献类型：
--
作者：
Looman WS;Thurmes AK;O'Conner-Von SK
探讨腭心面综合征（VCFS）儿童的健康相关生活质量（QoL），并按性别比较QoL，并与慢性病儿童和健康儿童样本进行比较。患有VCFS的儿童的父母完成了一份邮寄到家中的书面调查。45名2至18岁VCFS儿童的父母参与了这项研究，并将他们的研究结果与健康儿童（n = 10，343）和各种慢性病儿童（n = 683）父母样本的相同测量结果进行了比较。使用PedsQL™测量模型测量QoL（包括疲劳）。根据父母的报告，从行动价值分类系统开发的性格特征列表中评估优势。与健康儿童相比，生活质量在所有领域普遍较低。VCFS的男孩得分显着低于女孩的学校功能和认知疲劳。与慢性病儿童相比，VCFS儿童在情感、社会和学校功能方面得分较低，但在身体健康方面则不然。父母们一致认为孩子的优点是幽默、有爱心、善良、坚持和热情。VCFS儿童的生活质量特点是在认知、社会和情感领域存在重大挑战。另一方面，这些孩子的父母将他们描述为具有可能有助于应对这种情况的日常挑战的力量。
To explore health related quality of life (QoL) among children with velocardiofacial syndrome (VCFS), and to compare QoL by gender and with samples of chronically ill and healthy children. Parents of children with VCFS completed a written survey mailed to the home. Parents of 45 children ages 2 to 18 years with VCFS participated in this study, and their findings were compared to published data on the same measures from samples of parents of healthy children (n = 10,343) and children with a variety of chronic conditions (n = 683). QoL, including fatigue, was measured using the PedsQL™ Measurement Model. Strengths were assessed by parent report from a list of character traits developed from the Values in Action Classification system. QoL was generally lower across all domains compared to healthy children. Boys with VCFS scored significantly lower than girls on school functioning and cognitive fatigue. Compared to children with chronic conditions, children with VCFS scored lower on emotional, social, and school functioning, but not on physical health. Parents consistently described their children's strengths as humor, caring, kindness, persistence, and enthusiasm. QoL among children with VCFS is characterized by significant challenges in the cognitive, social, and emotional domains. On the other hand, parents of these children describe them as having strengths that may be useful in coping with the daily challenges of this condition.
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影响因子：
11.9
作者：
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通讯作者：
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影响因子：
4.4
作者：
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通讯作者：
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影响因子：
1.4
作者：
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通讯作者：
Ventureyra, ECG
影响因子：
3.6
作者：
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通讯作者：
Bleijenberg, Gijs
DOI：
10.1111/j.1365-2788.2007.00955.x
发表时间：
2007-09-01
影响因子：
3.6
作者：
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通讯作者：
Swillen, A.