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Health related quality of life in young, steroid-naïve boys with Duchenne muscular dystrophy
Neuromuscular Disorders ( IF 2.8 ) Pub Date : 2021-06-10 , DOI: 10.1016/j.nmd.2021.06.001
Craig Campbell 1 , Elaine McColl 2 , Michael P McDermott 3 , William B Martens 4 , Michela Guglieri 5 , Robert C Griggs 4 ,
Affiliation  

Knowledge of health related quality of life (HRQOL) in the immediate phase following DMD diagnosis has not been well-characterized. It is important to understand HRQOL early in disease for both clinical care and studies of treatment. The relationship between parent-proxy and child self-report HRQOL and their associations with medical, psycho-social and behavioral symptoms deserve study. In this study HRQOL was measured using the PedsQL inventory in parent/caregiver and corticosteroid-naïve boys (ages 4 to 7 years) participating in the FOR-DMD study. Agreement between the parent-proxy report and the boys’ self-report HRQOL was measured using intraclass correlation coefficients (ICCs). Factors associated with HRQOL, including standardized psychosocial and behavioral measures in this cross-sectional sample, were explored using correlations. The results showed that the level of agreement between 70 dyads of child self-report and parent-proxy ratings of HRQOL was poor for the generic PedsQL total score (ICC=0.48, 95% CI (0.23, 0.66)) and its subscale scores, and was similarly low for the neuromuscular disease module (ICC=0.24, 95% CI (0.00, 0.45)). Parents rated their child's HRQOL as poorer than the children rated themselves in all scales. Psychosocial outcome measures were more highly associated with HRQOL measures than disease severity or patient demographic variables. In the early phases of DMD, child and parent-proxy HRQOL ratings were discordant. In early DMD, psychosocial and behavioral aspects appear to be more relevant to HRQOL than disease severity factors.



中文翻译:

杜氏肌营养不良症年轻、未使用类固醇男孩的健康相关生活质量

DMD 诊断后立即阶段的健康相关生活质量 (HRQOL) 知识尚未得到很好的表征。了解疾病早期的 HRQOL 对于临床护理和治疗研究都很重要。父母代理和儿童自我报告 HRQOL 之间的关系及其与医学、心理社会和行为症状的关联值得研究。在这项研究中,使用参与 FOR-DMD 研究的父母/照顾者和未使用皮质类固醇的男孩(4 至 7 岁)的 PedsQL 清单测量 HRQOL。父母代理报告和男孩自我报告 HRQOL 之间的一致性是使用组内相关系数 (ICCs) 测量的。使用相关性探索了与 HRQOL 相关的因素,包括该横截面样本中标准化的社会心理和行为测量。结果表明,对于通用 PedsQL 总分(ICC=0.48, 95% CI (0.23, 0.66))及其子量表得分,70 对儿童自我报告和 HRQOL 父母-代理评级之间的一致性水平较差,神经肌肉疾病模块也同样低(ICC=0.24, 95% CI (0.00, 0.45))。父母对孩子的 HRQOL 的评价低于孩子在所有量表中对自己的评价。与疾病严重程度或患者人口统计学变量相比,心理社会结果测量与 HRQOL 测量的相关性更高。在 DMD 的早期阶段,儿童和父母代理 HRQOL 评级不一致。在早期 DMD 中,与疾病严重程度因素相比,心理社会和行为方面似乎与 HRQOL 更相关。

更新日期:2021-06-10
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