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首页> 外文期刊>BMJ paediatrics open. >Health-related quality of life (HRQOL) in children and adolescents with congenital heart disease: a cross-sectional survey from South India
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Health-related quality of life (HRQOL) in children and adolescents with congenital heart disease: a cross-sectional survey from South India

机译：先天性心脏病的儿童和青少年的健康相关生活质量（HRQOL）：来自南印度的横断面调查

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Objective There are limited data on health-related quality of life (HRQOL) for children and adolescents with uncorrected congenital heart disease (CHD) from low-income and middle-income countries where late presentation is common. We sought to compare HRQOL of children and adolescents with uncorrected CHD to that of controls using the Pediatric Quality of Life Inventory (PedsQL 4.0). Methods The study design is a cross-sectional analytical survey. The study setting was (1) Hospital-based survey of patients with CHD and their parents. (2) Community survey of controls and their parents. Subjects included (1) Children/adolescents with CHD between the ages of 2 years and 18 years and their parents enrolled in a previous study (n=308). (2) Unmatched community controls (719 children/adolescents, aged 2–18 years) and their parents. Participants were given PedsQL 4.0 to fill out details. Parents assisted children 5–7 years of age in filling the questionnaires. Children younger than 5 years had only parent-reported HRQOL and those above 5 years had both self-reported and parent-reported HRQOL. Results The median (IQR) total generic HRQOL from self-reports for CHD subjects and controls were 71.7 (62.0, 84.8) and 91.3 (82.6, 95.7), respectively. The corresponding figures for parent-reports were 78.3 (63.0, 90.5) and 92.4 (87.0, 95.7) respectively. The adjusted median difference was ?20.6 (99% CI ?24.9 to ?16.3, p0.001) for self-reported and ?14.1 (99% CI ?16.7 to ?11.6, p0.001) for parent-reported total HRQOL between patients with CHD and controls. Cardiac-specific HRQOL by self-reports was 75.0 (53.6, 92.9) for heart problems, 95.0 (73.8, 100.0) for treatment barriers, 83.3 (66.7, 100.0) for physical appearance, 87.5 (62.5, 100.0) for treatment-related anxiety, 91.7 (68.8, 100.0) for cognitive problems and 83.3 (66.7, 100.0) for communication. The values for parent-reports were 71.4 (53.6, 85.7), 100.0 (75.0, 100.0), 100.0 (75.0, 100.0), 81.3 (50.0, 100.0), 100.0 (81.2, 100.0) and 83.3 (50.0, 100.0), respectively. Conclusions Children and adolescents with uncorrected CHD reported significant reductions in overall quality of life compared with controls.
机译：目的对于来自低收入和中等收入国家的未成年人先天性心脏病（CHD）儿童和青少年，与健康相关的生活质量（HRQOL）数据很少，这些国家普遍出现迟发情况。我们试图通过儿童生活质量量表（PedsQL 4.0），将未校正CHD的儿童和青少年的HRQOL与对照组的HRQOL进行比较。方法研究设计是一项横断面分析调查。研究设置为（1）对冠心病患者及其父母的医院基础调查。 （2）对控件及其父母进行社区调查。受试者包括（1）2岁至18岁之间患有CHD的儿童/青少年，其父母参加了先前的研究（n = 308）。 （2）无与伦比的社区控制（719名2-18岁的儿童/青少年）及其父母。为参与者提供了PedsQL 4.0来填写详细信息。父母协助5-7岁的孩子填写问卷。 5岁以下的孩子只有父母报告的HRQOL，而5岁以上的孩子既有自我报告的，也有父母报告的HRQOL。结果冠心病受试者和对照组自我报告的总通用HRQOL中位数（IQR）分别为71.7（62.0，84.8）和91.3（82.6，95.7）。上级报告的相应数字分别为78.3（63.0，90.5）和92.4（87.0，95.7）。自我报告的调整后中位数差异为？20.6（99％CI≥24.9至？16.3，p <0.001），父母报告的患者之间的总HRQOL差异为？14.1（99％CI≥16.7至？11.6，p <0.001）。与冠心病和控制。自我报告的心脏特异性HRQOL对于心脏问题为75.0（53.6，92.9），对于治疗障碍为95.0（73.8，100.0），对于身体外表为83.3（66.7，100.0），对于治疗相关性焦虑为87.5（62.5，100.0） ，认知问题为91.7（68.8，100.0），交流为83.3（66.7，100.0）。父报表的值分别为71.4（53.6，85.7），100.0（75.0，100.0），100.0（75.0，100.0），81.3（50.0，100.0），100.0（81.2，100.0）和83.3（50.0，100.0） 。结论与对照组相比，未校正CHD的儿童和青少年的总体生活质量明显下降。

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