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.

参考文献

[1] du Plessis K, d'Udekem Y.The neurodevelopmental outcomes of patients with single ventricles across the lifespan[J].Ann Thorac Surg, 2019, 108(5):1565-1572.
[2] Mellion K, Uzark K, Cassedy A, et al.Health-related quality of life outcomes in children and adolescents with congenital heart disease[J].J Pediatr, 2014, 164(4):781-788,e1.
[3] Idorn L, Jensen AS, Juul K, et al.Quality of life and cognitive function in Fontan patients, a population-based study[J].Int J Cardiol, 2013, 168(4):3230-3235.
[4] Ji Y, Chen S, Li K, et al.Measuring health-related quality of life in children with cancer living in Mainland China:feasibility, reliability and validity of the Chinese Mandarin version of PedsQL 4.0 Generic Core Scales and 3.0 Cancer Module[J].Health Qual Life Outcomes, 2011, 9:103.
[5] Uzark K, Jones K, Burwinkle TM, et al.The Pediatric Quality of Life Inventory^TM in children with heart disease[J].Prog Pediatr Cardiol, 2003, 18(2):141-149.
[6] Denniss DL, Sholler GF, Costa DSJ, et al.Need for routine screening of health-related quality of life in families of young children with complex congenital heart disease[J].J Pediatr, 2019, 205:21-28,e2.
[7] Varni JW, Burwinkle TM, Seid M, et al.The PedsQL^TM 4.0 as a pediatric population health measure:feasibility, reliability, and validity[J].Ambul Pediatr, 2003, 3(6):329-341.
[8] Uzark K, Zak V, Shrader P, et al.Assessment of quality of life in young patients with single ventricle after the fontan operation[J].J Pediatr, 2016, 170:166-172.e1.
[9] Ladak LA, Hasan BS, Gullick J, et al.Health-related quality of life in surgical children and adolescents with congenital heart disease compared with their age-matched healthy sibling:a cross-sectional study from a lower middle-income country, Pakistan[J].Arch Dis Child, 2019, 104(5):419-425.
[10] Kaltman J, Di H, Tian Z, et al.Impact of congenital heart disease on cerebrovascular blood flow dynamics in the fetus[J].Ultrasound Obstet Gynecol, 2005, 25(1):32-36.
[11] Atz AM, Zak V, Mahony L, et al.Longitudinal outcomes of patients with single ventricle after the fontan procedure[J].J Am Coll Cardiol, 2017, 69(22):2735-2744.
[12] McCrindle BW, Williams RV, Mital S, et al.Physical activity levels in children and adolescents are reduced after the Fontan procedure, independent of exercise capacity, and are associated with lower perceived general health[J].Arch Dis Child, 2007, 92(6):509-514.
[13] Moola F, Fusco C, Kirsh JA.The perceptions of caregivers toward physical activity and health in youth with congenital heart disease[J].Qual Health Res, 2011, 21(2):278-291.
[14] Tamayo C, Manlhiot C, Patterson K, et al.Longitudinal evaluation of the prevalence of overweight/obesity in children with congenital heart disease[J].Can J Cardiol, 2015, 31(2):117-123.
[15] DeMaso DR, Calderon J, Taylor GA, et al.Psychiatric disorders in adolescents with single ventricle congenital heart disease[J].Pediatrics, 2017, 139(3):e20162241.
[16] Knowles RL, Day T, Wade A, et al.Patient-reported quality of life outcomes for children with serious congenital heart defects[J].Arch Dis Child, 2014, 99(5):413-419.
[17] Tran D, Maiorana A, Ayer J, et al.Recommendations for exercise in adolescents and adults with congenital heart disease[J].Prog Cardiovasc Dis, 2020, 63(3):350-366.
[18] Dulfer K, Duppen N, Van-Dijk AP, et al.Parental mental health moderates the efficacy of exercise training on health-related quality of life in adolescents with congenital heart disease[J].Pediatr Cardiol, 2015, 36(1):33.

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

PDF

可视化

摘要/Abstract

引用本文

使用本文

参考文献

相关文章 15

编辑推荐

Metrics

[1]	党佳佳, 马宁, 宋逸. 成人游戏力与3~8岁儿童脑功能发展的关系[J]. 中国儿童保健杂志, 2021, 29(4): 389-392.
[2]	秦莹, 仰曙芬. 维生素D与脑发育相关研究进展[J]. 中国儿童保健杂志, 2021, 29(4): 393-396.
[3]	刘敏, 王莹, 刘期芬. 学龄前儿童久坐行为时间与身体活动水平、心理健康状况的关系[J]. 中国儿童保健杂志, 2021, 29(4): 418-420.
[4]	周州, 邓梁琼, 刘萍, 黄婷, 曾婷. 柳州市中小学生尿铅水平及影响因素研究[J]. 中国儿童保健杂志, 2021, 29(4): 421-424.
[5]	王伟, 张月芳, 何红茹, 杨丽芳, 张欢, 范红鸽, 俱西驰. 早期养育理念与行为干预对婴幼儿喂养及生长发育的影响[J]. 中国儿童保健杂志, 2021, 29(3): 258-261.
[6]	谢冰洁, 吴国连, 贾雅雅, 魏晓娟, 张晋晋, 王惠梅. 学龄前儿童躯体伤害恐惧的相关因素研究[J]. 中国儿童保健杂志, 2021, 29(3): 272-276.
[7]	郭冰冰, 蒋新液, 卫雅蓉, 裴晶晶, 许吟. 中国儿童青少年生长迟缓患病率Meta分析[J]. 中国儿童保健杂志, 2021, 29(3): 296-300.
[8]	胡佳, 沈蕙, 尹洁云. 苏州市儿童青少年身高别血压筛查简表的效果评价[J]. 中国儿童保健杂志, 2021, 29(2): 124-128.
[9]	黄萍, 林新梅, 郭杜平, 巴学国, 魏正容, 丁红燕, 何茂云, 王全生, 徐世英, 柯刚. 四川省甘孜州高原藏族地区0~6岁儿童维生素A水平与影响因素[J]. 中国儿童保健杂志, 2021, 29(2): 143-146.
[10]	丁蕾, 陈彬, 徐勤. 苏州市姑苏区公办与民工学校小学生的生长发育情况[J]. 中国儿童保健杂志, 2021, 29(2): 147-150.
[11]	刘明霞, 花静. 电子屏幕暴露对儿童睡眠影响的研究进展[J]. 中国儿童保健杂志, 2021, 29(2): 176-180.
[12]	李雪峰. 儿童生长痛与血清25羟维生素D水平及其它相关因素分析[J]. 中国儿童保健杂志, 2021, 29(2): 194-197.
[13]	次旦旺姆, 郑晓玲, 刘治娟. 拉萨市2~6岁幼托儿童生长发育水平和贫血调查[J]. 中国儿童保健杂志, 2021, 29(2): 209-213.
[14]	张月, 石艳, 边程鹏, 王勤, 陈雪, 张帆. 西昌市城区3~14岁儿童身高状况分析[J]. 中国儿童保健杂志, 2021, 29(2): 214-217.
[15]	吴剑波, 尹晓娜, 吴传安, 张晶宇, 张丽君, 静进. 婴幼儿期视屏接触时间与多动指数的关联性研究[J]. 中国儿童保健杂志, 2021, 29(1): 9-12.