使用移动设备对弗里德赖希共济失调患儿生活质量的影响。
Impact of Mobility Device Use on Quality of Life in Children With Friedreich Ataxia.
作者信息
Ejaz Resham, Chen Shiyi, Isaacs Charles J, Carnevale Amanda, Wilson Judith, George Kristen, Delatycki Martin B, Perlman Susan L, Mathews Katherine D, Wilmot George R, Hoyle J Chad, Subramony Sub H, Zesiewicz Theresa, Farmer Jennifer M, Lynch David R, Yoon Grace
机构信息
1 Division of Clinical and Metabolic Genetics, Department of Paediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
2 Clinical Research Services, Child Health Evaluative Sciences/Biostatistics Design & Analysis Unit, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
出版信息
J Child Neurol. 2018 May;33(6):397-404. doi: 10.1177/0883073818764941. Epub 2018 Apr 2.
OBJECTIVE
To determine how mobility device use impacts quality of life in children with Friedreich ataxia.
STUDY DESIGN
Data from 111 pediatric patients with genetically confirmed Friedreich ataxia were collected from a prospective natural history study utilizing standardized clinical evaluations, including health-related quality of life using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Module.
RESULTS
Mobility device use was associated with worse mean PedsQL total, physical, emotional, social, and academic subscores, after adjusting for gender, age of disease onset, and Friedreich Ataxia Rating Scale score. The magnitude of the difference was greatest for the physical subscore (-19.5 points, 95% CI = -30.00, -8.99, P < .001) and least for the emotional subscore (-10.61 points, 95% CI = -20.21, -1.02, P = .03). Transition to or between mobility devices trended toward worse physical subscore (-16.20 points, 95% CI = -32.07, -0.33, P = .05).
CONCLUSIONS
Mobility device use is associated with significant worsening of all domains of quality of life in children with Friedreich ataxia.
目的
确定使用移动设备如何影响弗里德赖希共济失调患儿的生活质量。
研究设计
从一项前瞻性自然史研究中收集了111例基因确诊的弗里德赖希共济失调儿科患者的数据，该研究采用标准化临床评估，包括使用儿童生活质量量表（PedsQL）4.0通用核心模块进行与健康相关的生活质量评估。
结果
在调整性别、疾病发病年龄和弗里德赖希共济失调评定量表评分后，使用移动设备与较低的PedsQL总分、身体、情感、社会和学业子评分相关。身体子评分差异幅度最大（-19.5分，95%可信区间=-30.00，-8.99，P<.001），情感子评分差异幅度最小（-10.61分，9�%可信区间=-20.21，-1.02，P=.03）。转换至或在移动设备之间转换时，身体子评分有变差趋势（-16.20分，95%可信区间=-32.07，-0.33，P=.05）。
结论
使用移动设备与弗里德赖希共济失调患儿生活质量所有领域的显著恶化相关。
Zotero 插件