Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales.
Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales.
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患有慢性病的儿童和青少年的健康相关生活质量受损：利用 PedsQL 4.0 通用核心量表对 10 个疾病群和 33 个疾病类别/严重程度进行比较分析。
DOI：
10.1186/1477-7525-5-43
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发表时间：
2007-07-16
影响因子：
3.6
通讯作者：
Burwinkle, Tasha M.
中科院分区：
文献类型：
--
作者：
Varni, James W.;Limbers, Christine A.;Burwinkle, Tasha M.
生物医学科学和技术的进步使儿童慢性疾病的医疗保健得到了显著改善。随着生存率的提高，与健康相关的生活质量（HRQOL）问题变得更加突出。本研究的目的是从患者和家长的角度比较10种慢性疾病群和33种疾病类别/严重程度的一般HRQOL。比较还以健康儿童数据为基准。该分析基于来自10个医生诊断的疾病集群和33个疾病类别/严重程度的2,500多名儿科患者和9,500多名使用PedsQL™4.0通用核心量表的健康儿童。患者从普通儿科诊所、亚专科诊所和医院招募。患有糖尿病、胃肠道疾病、心脏病、哮喘、肥胖、终末期肾病、精神疾病、癌症、风湿病和脑瘫的儿童患者自我报告的总体HRQOL受损程度分别高于健康儿童，具有中等到较大的效应量。脑瘫患者自我报告的HRQOL受损最严重，糖尿病患者自我报告的HRQOL受损最好。家长代理报告与患者自我报告基本一致，有几个显著差异。结果表明，从儿童患者和家长的角度出发，利用PedsQL™4.0通用核心量表，儿科慢性病对不同疾病群、类别和严重程度的患者HRQOL的差异影响。本研究中包含的数据代表了比现有文献中先前报道的更大、更多样化的儿科慢性病患者群体。利用PedsQL™4.0通用核心量表，从儿童和家长的角度，研究结果为儿童慢性病对通用HRQOL的差异影响提供了重要信息。PedsQL™的这些发现对为患有慢性疾病的儿童提供的医疗保健服务具有临床意义。鉴于PedsQL™评分在不同儿科慢性疾病中报告的损害程度，对于那些HRQOL受损更严重的儿科患者，需要更有效的靶向治疗是明确和迫切的。
Advances in biomedical science and technology have resulted in dramatic improvements in the healthcare of pediatric chronic conditions. With enhanced survival, health-related quality of life (HRQOL) issues have become more salient. The objectives of this study were to compare generic HRQOL across ten chronic disease clusters and 33 disease categories/severities from the perspectives of patients and parents. Comparisons were also benchmarked with healthy children data. The analyses were based on over 2,500 pediatric patients from 10 physician-diagnosed disease clusters and 33 disease categories/severities and over 9,500 healthy children utilizing the PedsQL™ 4.0 Generic Core Scales. Patients were recruited from general pediatric clinics, subspecialty clinics, and hospitals. Pediatric patients with diabetes, gastrointestinal conditions, cardiac conditions, asthma, obesity, end stage renal disease, psychiatric disorders, cancer, rheumatologic conditions, and cerebral palsy self-reported progressively more impaired overall HRQOL than healthy children, respectively, with medium to large effect sizes. Patients with cerebral palsy self-reported the most impaired HRQOL, while patients with diabetes self-reported the best HRQOL. Parent proxy-reports generally paralleled patient self-report, with several notable differences. The results demonstrate differential effects of pediatric chronic conditions on patient HRQOL across diseases clusters, categories, and severities utilizing the PedsQL™ 4.0 Generic Core Scales from the perspectives of pediatric patients and parents. The data contained within this study represents a larger and more diverse population of pediatric patients with chronic conditions than previously reported in the extant literature. The findings contribute important information on the differential effects of pediatric chronic conditions on generic HRQOL from the perspectives of children and parents utilizing the PedsQL™ 4.0 Generic Core Scales. These findings with the PedsQL™ have clinical implications for the healthcare services provided for children with chronic health conditions. Given the degree of reported impairment based on PedsQL™ scores across different pediatric chronic conditions, the need for more efficacious targeted treatments for those pediatric patients with more severely impaired HRQOL is clearly and urgently indicated.
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