功能性单心室患儿的健康相关生存质量评估

doi:10.11852/zgetbjzz2020-2114

中国儿童保健杂志 ›› 2021, Vol. 29 ›› Issue (5): 492-496.DOI: 10.11852/zgetbjzz2020-2114

功能性单心室患儿的健康相关生存质量评估

王婷婷¹, 叶秀霞², 陈伟敏¹, 和永瑞¹, 秦荣¹, 洪海筏¹

1.上海交通大学医学院附属上海儿童医学中心心胸外科,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

收稿日期:2020-12-11 修回日期:2021-02-01 发布日期:2021-05-26
通讯作者: 洪海筏, E-mail:honghaifa@scmc.com.cn
作者简介:王婷婷(1995-),女,山东人,硕士在读,主要研究方向为单心室患儿术后生存质量。
基金资助:
国家自然科学基金(81570281);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)

Health-related quality of life in children with functional single ventricle

WANG Ting-ting^*, YE Xiu-xia, CHEN Wei-min, HE Yong-rui, QIN Rong, HONG Hai-fa

^*Department of Thoracic and Cardiovascular Surgery, Shanghai Children's Medical Center, Shanghai Jiao Tong University School of Medicine, Shanghai 200127, China

Received:2020-12-11 Revised:2021-02-01 Published:2021-05-26
Contact: HONG Hai-fa, E-mail:honghaifa@scmc.com.cn

摘要/Abstract

摘要： 目的调查功能性单心室患儿的健康相关生存质量(HRQOL),比较其与健康人群之间的差异。方法对2002-2018年在上海儿童医学中心诊断为功能性单心室的113名2～18岁患儿及其家长进行横断面分析。采用中文版儿童生存质量测定量表(PedsQL)4.0普适性量表和3.0心脏模块的自评表和家长报告表,通过独立样本t检验比较功能性单心室组与健康组的普适性量表得分,采用单因素方差分析比较不同年龄段普适性量表中家长报告表得分差异。通过Kruskal-Wallis H检验分析不同年龄段心脏模块差异。结果功能性单心室组的自评表和家长报告表得分在总分、生理、心理社会、情感、社会和学校方面均低于健康组,差异均有统计学意义(自评表:t=6.823、7.850、5.825、4.260、4.817、7.621,家长报告:t＝7.641、8.589、6.459、5.823、6.206、7.381,P＜0.05),并且学龄前患儿的生存质量得分偏低(F=4.090, P＜0.05)。在心脏模块中,自评表的感知身体外貌方面,8岁以上患儿得分明显降低(H=8.812,P＜0.05)。在自评表和家长报告表的治疗焦虑方面,8岁以下患儿得分偏低(H=6.045、14.702,P＜0.05)。结论与健康儿童相比,功能性单心室患儿的HRQOL明显下降,因此需要对其HRQOL进行相关干预及评估。

关键词: 健康相关生存质量, 儿童生存质量测定量表, 功能性单心室

Abstract: Objective To investigate health-related quality of life (HRQOL) in pediatric patients with functional single ventricle (FSV), and to compare HRQOL between children with FSV and healthy pediatric population. Methods A cross-sectional survey was conducted to recruit 113 pediatric patients with FSV aged 2 to 18 years and their parents from 2002 to 2018 in Shanghai Children's Medical Center.Patients and their parents completed the Chinese version of the Pediatric Quality of Life Inventory (PedsQL) 4.0 generic core scales and 3.0 cardiac module.Independent t-test was used to compare generic PedsQL scores between patients with FSV and healthy population.Generic PedsQL scores for parent proxy-report by age group were compared by ANOVA.Kruskal-Wallis H test was used to compare HRQOL by age group in the cardiac module. Results By self-report and parent proxy-report, generic PedsQL scores for patients with FSV were significantly lower than healthy population in the total scores, physical, psychosocial, emotional, social and school domains (self-report:t=6.823, 7.850, 5.825, 4.260, 4.817, 7.621; parent proxy-report:t=7.641, 8.589, 6.459, 5.823, 6.206, 7.381, P＜0.05).The PedsQL scores in preschool patients with FSV were significantly lower (F=4.090, P＜0.05).In the cardiac module, patients ≥8 years old reported lower scores for physical appearance (H=8.812, P＜0.05).Self-report and parent proxy-report PedsQL scores for treatment anxiety were significantly lower in patients ≤ 8 years old (H=6.045, 14.702, P＜0.05). Conclusions Overall, pediatric patients with FSV perceive poorer quality of life than healthy population.Assessment and interventions on pediatric patients' HRQOL are needed.

Key words: health-related quality of life, Pediatric Quality of Life Inventory, functional single ventricle

中图分类号:

R179

王婷婷, 叶秀霞, 陈伟敏, 和永瑞, 秦荣, 洪海筏. 功能性单心室患儿的健康相关生存质量评估[J]. 中国儿童保健杂志, 2021, 29(5): 492-496.

WANG Ting-ting, YE Xiu-xia, CHEN Wei-min, HE Yong-rui, QIN Rong, HONG Hai-fa. Health-related quality of life in children with functional single ventricle[J]. Chinese Journal of Child Health Care, 2021, 29(5): 492-496.

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功能性单心室患儿的健康相关生存质量评估

Health-related quality of life in children with functional single ventricle

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