Children with hypoplastic left heart syndrome have lower quality of life than healthy controls and children with other illnesses
Children with hypoplastic left heart syndrome have lower quality of life than healthy controls and children with other illnesses
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DOI：
10.1017/s1047951117001159
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发表时间：
2018-01-01
影响因子：
1
通讯作者：
Butz, Catherine
中科院分区：
文献类型：
--
作者：
Dempster, Nicole;Cua, Clifford L.;Butz, Catherine
目的：先前的研究表明，与健康常模相比，患有先天性心脏病的儿童报告的生活质量较低。一些研究专门评估了出生时患有左心发育不良综合征的儿童的生活质量，这种情况需要在三岁之前进行多次手术。这项研究的目的是使用一种经过经验验证的标准化测量工具-儿科生活质量问卷-来评估左心发育不良综合征儿童的生活质量，并将结果与类似的、医学上复杂的样本进行比较。方法：采用家长报告型儿科生活质量问卷，通过互联网门户网站收集人口学信息。共有121名左心发育不良综合征儿童的照顾者做出了回应。样本包括2-18岁的儿童(男性=10.81岁)。用独立样本t检验将我们的样本与公布的健康儿童和患有急慢性疾病的儿童的常模进行比较。结果：左心发育不良综合征儿童的总体生活质量得分(M=59.69)显著低于国内已发表的正常儿童常模(M=83.0)、急慢性疾病儿童(M=78.70)和慢性病儿童(P<；0.001)。左心发育不良综合征合并中风或癫痫的儿童(15%)报告的生活质量最低。结果适用于所有分量表(p<；0.001)。结论：左心发育不良综合征儿童似乎是一个非常脆弱的人群，跨心理社会领域和跨年龄段的功能障碍。需要进一步研究，以便及早查明这些儿童和家庭，特别是经历其他医疗并发症的儿童是否需要资源。
Objective: Previous studies suggest that children with congenital cardiac diagnoses report lower quality of life when compared with healthy norms. A few studies have evaluated quality of life specifically in children born with hypoplastic left heart syndrome, a condition requiring several surgeries before age three. The aim of this study was to use an empirically validated and standardised measure - the Pediatric Quality of Life Inventory - to evaluate quality of life in children with hypoplastic left heart syndrome and compare the findings with similar, medically complicated samples. Methods: The parent-report Pediatric Quality of Life Inventory was administered, and demographic information was collected through an internet portal. A total of 121 caregivers of children with hypoplastic left heart syndrome responded. The sample included children aged 2-18 years (M = 10.81 years). Independent sample t-tests were used to compare our sample with published norms of healthy children and children with acute or chronic illnesses. Results: Children with hypoplastic left heart syndrome were rated as having significantly lower overall quality-of-life scores (M = 59.69) compared with published norms of children without medical diagnoses (M = 83.00) and those with acute (M = 78.70) or chronic (M = 77.19) illnesses (p < 0.001). Children with hypoplastic left heart syndrome complicated by a stroke or seizure (15%) reported the lowest quality of life. The results held for all subscales (p < 0.001). Conclusions: Children with hypoplastic left heart syndrome appear to be a significantly vulnerable population with difficulties in functioning across psychosocial domains and across the age span. Further research is required to facilitate early identification of the need for resources for these children and families, especially for children who experience additional medical complications.