CHU9D和EQ-5D-Y量表在我国急性淋巴细胞白血病患儿中的自评与代评健康效用值一致性研究

Agreement Study of Self-reported and Proxy-reported Health Utility Values of CHU9D and EQ-5D-Y in Chinese Children with Acute Lymphoblastic Leukemia

目的:评价CHU9D和EQ-5D-Y量表在我国急性淋巴细胞白血病(以下简称“急淋”)患儿中的自评与代评健康效用值一致性,为准确测量急淋患儿的健康效用提供参考。方法:采用CHU9D和EQ-5D-Y量表对80名急淋患儿及其主要照顾人进行问卷调查。使用Gwet's AC1评估量表维度间的一致性,使用组内相关系数、Bland-Altman图评价健康效用值自评与代评一致性。根据自评与代评的健康效用值差值大小分为2个亚组,并进行关联性分析和logistic回归分析,探究影响自评与代评的健康效用值差异的潜在因素。结果:患儿平均年龄为11.7岁,平均病程为12.3个月。患儿的主要照顾人多为女性(72.5%),92.5%患儿的主要照顾人为患儿的父母。CHU9D和EQ-5D-Y量表各维度自评与代评的一致性水平大部分为“中等”至“极好”。两量表健康效用值一致性一般,自评与代评的健康效用值差异大小仅与患儿性别相关,且女性患儿的自评与代评的健康效用值差异较大的可能性为男性患儿的18.20倍。结论:CHU9D和EQ-5D-Y量表自评与代评的一致性中等,且差异不大。但是CHU9D自评与代评的一致性更易受潜在极端异常情况的影响。建议符合年龄的我国急淋患儿应尽量在稳定健康状态和适宜的应答环境下进行自评,可以由主要照顾人或调查员在旁进行单纯的读写辅助,从而更好地测量患儿最真实的健康状态。

Objective:To evaluate the agreement of HRQoL between self-reports and proxy-reports of children with acute lymphoblastic leukemia using CHU9D and EQ-5D-Y,and to provide suggestions for the accurate measurement of health utility in Chinese children with acute lymphoblastic leukemia.Methods:Self-administered CHU9D and EQ-5D-Y were completed by patients and their primary caregivers independently among 80 dyads.The agreement between self-reported and proxy-reported HRQoL was assessed using Gwet's AC1 for CHU9D and EQ-5D-Y dimensions,as well as the intraclass correlation coefficient(ICC)and Bland-Altman plots for health utility.The children were divided into two subgroups according to the magnitude of differences in health utility between self-reports and proxy-reports,and logistic regression analysis was performed to explore potential factors affecting child-proxy agreement.Results:The mean age of the children was 11.7 years,with a mean disease course of 12.3 months.Of all the primary caregivers,72.5%were female and 92.5%were the children's parents.The agreement between the self-reports and proxy-reports of CHU9D and EQ-5D-Y dimensions ranged from"moderate"to"very good".The health utility showed a fair agreement in both CHU9D and EQ-5D-Y.The magnitude of differences in health utility between the self-reports and proxy-reports was significantly affected by children's gender only,and female children were 18.20 times more likely than their male counterparts to have a greater difference.Conclusion:The agreement between self-reports and proxy-reports was generally moderate for both CHU9D and EQ-5D-Y without much difference.However,the agreement between the self-reported and proxy-reported CHU9D utility values was more sensitive to potential outliers.It is recommended that self-reported HRQoL should be used for children with acute lymphoblastic leukemia who are in the eligible age range.More importantly,the children should be in a stable health condition and an appropriate environment should be provided,with simple assistance only for reading and writing from a primary caregiver or an investigator wherever necessary,in order to make sure that the health status of children could be accurately measured and self-reported.