泰文版儿科生存质量量表 3.0 杜氏肌营养不良模块在泰国杜氏肌营养不良症儿童中的信度和效度。
Reliability and validity of the Thai version of the Pediatric Quality of Life inventory™ 3.0 Duchenne Muscular Dystrophy module in Thai children with Duchenne Muscular Dystrophy.
机构信息
Division of Neurology, Department of Pediatrics, Faculty of Medicine Siriraj Hospital, Mahidol University, 2 Wanglang Road, Bangkoknoi, Bangkok, 10700, Thailand.
出版信息
Health Qual Life Outcomes. 2019 May 2;17(1):76. doi: 10.1186/s12955-019-1140-y.
BACKGROUND
Duchenne Muscular Dystrophy (DMD) is the most common genetic neuromuscular disorder in children. This chronic illness may impact the physical, family, social and school life of affected children and their families. These impacts can be assessed using a disease-specific measure of health-related quality of life (HRQOL). The Pediatric Quality of Life Inventory™ (PedsQL™) 3.0 DMD Module is designed to assess quality of life in children with DMD. This study aimed to evaluate the reliability and validity of the Thai version of the PedsQL™ 3.0 DMD Module in Thai children aged 5-18 years.
METHOD AND MATERIALS
The Thai translation of the PedsQL™ 3.0 Duchenne Muscular Dystrophy Module was performed in accordance with established guidelines using forward-back translation and was approved by the creator of the instrument. The Thai version of the scale was administered to children with DMD and their parents at the neuromuscular clinic at Siriraj Hospital and during the annual DMD Day meeting. Psychometric properties were established, and a re-test was performed within 2-4 weeks.
RESULTS
Fifty-six children were enrolled. An acceptable level of internal reliability was achieved, as measured by α > 0.7 (total score: child report α = 0.88, parent report α = 0.92). Test-retest reliability showed good agreement, with the following intraclass correlation coefficients (ICCs) for the total score (calculated using all subscales from the child reports and parent reports): child report ICCs = 0.74 and parent report ICCs = 0.88. The mean total scale score was 66.03 for ambulatory children and 55.87 (P = 0.08) for non-ambulatory children according to child self-reports and 70.01 (ambulatory) and 54.29 (non-ambulatory) (P ≤ 0.01) according to parent proxy reports. The child self-reports were in acceptable agreement with the parent proxy reports for most subscales (ICC range 0.49-0.81).
CONCLUSIONS
The PedsQL™ 3.0 DMD Module Thai version is a reliable and valid measure of disease-specific health-related quality of life in Thai children with Duchenne muscular dystrophy.
背景
杜氏肌营养不良症（DMD）是儿童中最常见的遗传性神经肌肉疾病。这种慢性疾病会影响受影响儿童及其家庭的身体、家庭、社会和学校生活。这些影响可以使用特定于疾病的健康相关生活质量（HRQOL）测量来评估。儿科生活质量问卷™（PedsQL™）3.0 DMD 模块旨在评估 DMD 儿童的生活质量。本研究旨在评估泰国版 PedsQL™ 3.0 DMD 模块在 5-18 岁泰国儿童中的可靠性和有效性。
方法和材料
根据既定指南，使用正向-反向翻译法对 PedsQL™ 3.0 杜氏肌营养不良模块进行了泰语翻译，并得到了该工具创建者的认可。在诗里拉吉医院的神经肌肉诊所和每年的 DMD 日会议上，向 DMD 儿童及其父母发放了该量表的泰语版。建立了心理测量学特性，并在 2-4 周内进行了重测。
结果
共纳入 56 名儿童。内部信度测试显示，α 值大于 0.7（总分：儿童报告α=0.88，家长报告α=0.92），说明信度可接受。重测信度显示出良好的一致性，以下为总评分的组内相关系数（ICC）（使用儿童报告和家长报告的所有子量表计算）：儿童报告 ICC=0.74，家长报告 ICC=0.88。根据儿童自我报告，活动儿童的平均总分 66.03 分，非活动儿童的平均总分 55.87 分（P=0.08），根据家长代理报告，活动儿童的平均总分 70.01 分，非活动儿童的平均总分 54.29 分（P≤0.01）。儿童自我报告与家长代理报告在大多数子量表上具有可接受的一致性（ICC 范围 0.49-0.81）。
结论
泰国版 PedsQL™ 3.0 DMD 模块是一种可靠且有效的测量泰国 Duchenne 肌营养不良症儿童特定于疾病的健康相关生活质量的工具。
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