Quality of life of pediatric patients with lower urinary tract dysfunction and their caregivers
Quality of life of pediatric patients with lower urinary tract dysfunction and their caregivers
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DOI：
10.1007/s00467-010-1744-2
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发表时间：
2011-04-01
影响因子：
3
通讯作者：
Koch, Vera H.
中科院分区：
文献类型：
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作者：
Lopes, Marcos;Ferraro, Alexandre;Koch, Vera H.
人们对生活质量(QOL)研究的兴趣有所增加，因为它们是评估和比较医疗保健提供和卫生干预影响的有用工具。不同的人对生活质量的认知不同。它的特征在儿科年龄组中尤其困难，因为每个发育阶段都有特定的需求。先天性下尿路功能障碍的发生率很高，他们的处理改变了患者及其家人的日常生活。在一项横断面研究中，我们对28名患有尿路畸形的儿童和青少年及其照料者的生活质量进行了评估，并与38名年龄配对的健康儿童/照顾者进行了比较。在患者的问卷中增加了四个问题，以评估与他们的泌尿外科管理相关的问题。我们的结果显示，患者组的AUQUEI总分较低(P<；0.0213，费舍尔的准确测试)，他们在处理社交方面也存在问题，如在课堂上，表现出与日常排尿有关的负面情绪，但似乎很好地适应了间歇性导尿。在SF-36疼痛和身体限制领域，患者组照顾者的生活质量得分有下降的趋势。
The interest in quality of life (QoL) studies has increased as they are useful instruments to evaluate and compare medical care delivery and the impact of health interventions. The perception of QoL differs among individuals. Its characterization is especially difficult in the pediatric age group as each developmental stage presents specific demands. The prevalence of congenital lower urinary dysfunction is high and their management changes the daily routine of the patients and their families. In a cross-sectional study, we evaluated the QoL of 28 children and adolescents with urinary malformations and their caregivers using the Autoquestionnaire Qualit, de Vie Enfant Imag, (AUQUEI) and Short-Form 36 (SF-36), respectively, and compared the results with 38 healthy control age-paired children/caregivers. Four questions were added to patients' questionnaire to evaluate issues related to their urological management. Our results show lower AUQUEI total scoring in the patients' group (p < 0.0213, Fisher's exact test), who also present problems in dealing with social aspects, such as being at classroom, manifest negative feelings in relation to diurnal urinary losses but seem to be well adapted to intermittent urethral catheterization. A tendency for worse QoL scores in the patients' group caregivers was detected in the SF-36 pain and physical limitation domains.