先天性心脏病患儿生存质量评分与家庭影响评分及二者相关性评价

Evaluation on life quality score in CHD-children,family impact score in their parents and correlation coefficient between the scores

目的采用儿童生存质量测定量表体系(pediatric quality of life inventory measurement models,PedsQLTM)特异性心脏病模块与家庭影响模块,评价先天性心脏病患儿生存质量评分与家庭影响评分及其相关性。方法研究对象为来自2016年2月至2017年2月在广东省人民医院住院治疗的先天性心脏病患儿。采用流行病学现况调查方法,以自行设计的调查问卷、PedsQLTM特异性心脏病模块3.0与家庭影响模块2.0为测量工具,对先天性心脏病患儿(家长)进行调查。本次调查收集有效问卷288份(有效问卷率96.6%),其中男126例,女162例,年龄为(3.73±1.88)岁。结果先天性心脏病患儿生存质量总得分为(73.98±15.59)分;女患儿生存质量总得分高于男患儿,差异有统计学意义[(76.21±13.93)分vs.(71.11±17.13)分,t=-2.71,P=0.0072]。患儿在“心脏症状及其治疗相关问题”维度得分为(77.36±17.72)分;女患儿在该维度上得分高于男患儿,差异有统计学意义[(80.09±16.28)分vs.(73.84±18.91)分,t=-3.01,P=0.0028]。PedsQLTM家庭影响模块总得分为(59.32±17.27)分,在“情感功能相关问题”维度得分为(61.20±21.59)分。有5.21%的患儿出现“几乎总是感冒”的状况,有6.60%的患儿出现“几乎总是心搏很快”状况。有5.21%的患儿家长表示“几乎总是感到焦虑”,有3.82%患儿家长表示“几乎总是感到悲伤”。PedsQLTM心脏病模块总得分与家庭影响模块总得分呈正相关(r=0.5554,P<0.0001)。结论先天性心脏病患儿生存质量总得分处于中高水平状态,高于国内同类研究;女患儿生存质量总得分高于男患儿。PedsQLTM家庭影响模块总得分处于中等水平状态。先天性心脏病患儿PedsQLTM心脏病模块总得分与父母PedsQLTM家庭影响模块总得分显示中度正相关关系。

Abstract: Objectives Specific heart disease module and family impact module of the pediatric quality of life inventory measurement models(PedsQLTM)were applied to evaluate the life quality scores and the family impacts scores of the children with congenital heart disease(CHD)(CHD-children),and the correlation coefficient was also evaluated.Methods The subjects were CHD-children treated from February 2016 to February 2017 in Guangdong Provincial People′s Hospital.With epidemiological cross-sectional study,self-designed questionnaire,questionnaires of specific cardiac module 3.0 and family impact module 2.0 of PedsQLTM were used to investigate the CHD-children for the quality of life(QOL),and their parents for the family impact scores.A total of 288 valid questionnaires were collected(the valid rate was 96.6%),aged(3.73±1.88)years,including 126 males and 162 females.Results QOL average total score in CHD-children was 73.98±15.59;QOL average total score of female was higher than that of male(76.21±13.93 vs.71.11±17.13,t=-2.71,P=0.0072).Average score in the CHD-children on the dimension of“heart problems and treatment related issues“ was(77.36±17.72);female′s average score in the CHD-children on the dimension of“heart problems and treatment related issues”was higher than male′s(80.09±16.28 vs.73.84±18.91,t=-3.01,P=0.0028).Average total score on the family impact module was 59.32±17.27,and average score of“emotional functioning related issues”was 61.20±21.59.About 5.21% CHD-children were always getting a cold and 6.60% of them were always getting tachycardia.About 5.21% parents were always feeling anxiety and 3.82% of them were always feeling sadness.Correlation coefficient between CHD-children′s QOL average total score and family impact module average total score was 0.55544(P<0.0001).Conclusions Average total score of QOL in CHD-children was higher than what of the similar researches in China,and the female′s being higher than the male′s was also noticed.Average score of family impact module was in the middle or low level.There was a moderate positive correlation between QOL average total score of CHD-children and average total score on the family impact module.