采用儿童生存质量测定量表分析功能性单心室术后患儿的生存质量  

Analysis of postsurgical quality of life in children with functional single ventricle by using pediatric quality of life inventory

作　　者：王婷婷 叶秀霞[2] 陈伟敏[1] 和永瑞 秦荣 周振发 洪海筏[1] WANG Tingting;YE Xiuxia;CHEN Weimin;HE Yongrui;QIN Rong;ZHOU Zhenfa;HONG Haifa(Department of Thoracic and Cardiovascular Surgery, Shanghai Children's Medical Center, Shanghai Jiao Tong University School of Medicine, Shanghai 200127, China;Departmont of Neonatology, Shanghai Children's Medical Center, Shanghai Jiao Tong University School of Medicine, Shanghai 200127, China)

机构地区：[1]上海交通大学医学院附属上海儿童医学中心心胸外科,中国上海200127 [2]上海交通大学医学院附属上海儿童医学中心新生儿科,中国上海200127

出　　处：《教育生物学杂志》2021年第2期114-118,共5页Journal of Bio-education

基　　金：上海申康医院发展中心临床研究培育项目(SHDC12017X08);上海市卫生健康委员会项目(201740214)。

摘　　要：目的探讨功能性单心室手术后患儿的生存质量。方法采用儿童生存质量测定量表(pediatric quality of life inventory,PedsQL)4.0中文版普适性量表对77例5~12岁功能性单心室手术后的患儿及其家长(实验组)进行横断面分析,以1583名健康儿童的资料作为对照组。比较实验组与对照组的量表评分,对实验组5~7岁和8~12岁患儿的自评表和家长报告表得分之间的相关性与一致性进行Pearson相关分析和组内相关系数分析。结果实验组患儿的自评表和家长报告表评分均显著低于对照组,差异均有统计学意义(P<0.05)。5~7岁患儿的自评表与家长报告表之间在总分、情感功能、社会功能和学校表现方面的一致性均较好,并且具有高度相关性;8~12岁患儿自评表和家长报告表在各方面的一致性均较差,相关性低。结论功能性单心室手术后患儿的生存质量明显差于健康儿童,因此需要对患儿的生理和心理方面进行干预。当患儿无法评估生存质量而使用家长报告表时,应该考虑年龄对患儿和父母评分一致性的影响。Objective To assess postsurgical quality of life(QoL)in children with functional single ventricle(FSV).Methods In this cross-sectional study,the Chinese version of the pediatric quality of life inventory(PedsQL)4.0 generic core scale was used to assess postsurgical QoL of 77 children with FSV(aged 5~12 years)and their parents.Data of 1583 health children were collected as control.The PedsQL scores completed by children with FSV and their parents were compared with healthy controls.Pearson correlation and intra-class correlation coefficient were calculated to analyze the correlation and agreement between the child self-report and parent proxy-report for children with FSV(aged 5~7 years and aged 8~12 years).Results The PedsQL scores of children with FSV were significantly lower than those of healthy controls in child self-report and parent proxy-report(P<0.05).For patients aged 5-7 years,the agreement between child self-report and parent proxy-report was great and the relationship between them was a strong correlation in total score,emotional functioning,social functioning,and school functioning.However,poor agreement and correlation between child self-report and parent proxy-report were found in all domains for FSV children aged 8-12 years.Conclusion Children with FSV have significantly lower postsurgical QoL than healthy controls and interventions targeting both physical and psychosocial domains are needed.When patients cannot complete child self-report and parent proxy-report is adopted,doctors should consider the effect of age on the agreement between them.

关 键 词：功能性单心室 生存质量 儿童 

分 类 号：R47[医药卫生—护理学]