Parent-child discrepancies in health-related quality of life of children and adolescents with myalgic encephalomyelitis/chronic fatigue syndrome.
Parent-child discrepancies in health-related quality of life of children and adolescents with myalgic encephalomyelitis/chronic fatigue syndrome.
复制标题
肌痛性脑脊髓炎/慢性疲劳综合征儿童和青少年健康相关生活质量的亲子差异。
DOI：
10.1007/s11136-021-02919-w
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发表时间：
2021
期刊：
影响因子：
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通讯作者：
Jason,LeonardA
中科院分区：
文献类型：
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作者：
Ekberg,KristaM;Torres,Chelsea;Jason,LeonardA
目的少数研究考察了亲子在肌痛性脑脊髓炎/慢性疲劳综合征(ME/CFS)症状自评量表和健康相关生活质量(HRQOL)方面的差异。这项研究的目的是调查确诊的ME/CFS患者和对照儿童样本之间的亲子报告差异，以更好地了解儿童和青少年报告的作用。共有147对亲子二人组(75对ME/CFS和72对对照)完成了评估HRQOL和ME/CFS症状的措施。在个体层面上，一致性是使用组内相关系数(ICC)分数来评估的。结果类内相关分析显示，符合ME/CFS至少一个病例定义的亲子对与对照组的亲子对之间存在不同程度的一致性。结论本研究支持亲子报告的ME/CFS症状与HRQOL测量之间存在差异。最后讨论了该方法的局限性和未来发展方向。
PurposeFew studies have examined parent-child discrepancies on self-report measures of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptomatology and health-related quality of life (HRQOL). The aim of this study was to investigate parent-child reporting discrepancies between a pediatric sample of diagnosed patients with ME/CFS and controls to better understand the role of children and adolescent reporting.MethodData for this study were drawn from a community-based epidemiological study of pediatric ME/CFS in the Chicagoland area. A total of 147 parent-child dyads (75 pairs with ME/CFS and 72 control pairs) completed measures assessing HRQOL and ME/CFS symptomatology. At the individual level, agreement was assessed using intra-class correlation coefficient (ICC) scores. Agreement was measured at the group level by a comparison of means using paired-samplet-tests.ResultsIntra-class correlations revealed varied agreement in both parent-child pairs of children who met at least one case definition of ME/CFS and in parent-child pairs in the control group.ConclusionThe current study provides support for the existence of discrepancies between parent-child reports of ME/CFS symptomatology and HRQOL measures. Limitations and future directions are discussed.