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。
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.
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
Key words
health-related quality of life /
Pediatric Quality of Life Inventory /
functional single ventricle
{{custom_sec.title}}
{{custom_sec.title}}
{{custom_sec.content}}
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 InventoryTM 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 PedsQLTM 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.
基金
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)
PDF(546 KB)
