Discipline of Pediatrics, School of Women's and Children's Health, UNSW Medicine, The University of New South Wales, Sydney, NSW, Australia; Heart Center for Children, The Sydney Children's Hospitals Network (Westmead and Randwick), Sydney, NSW, Australia.
Heart Center for Children, The Sydney Children's Hospitals Network (Westmead and Randwick), Sydney, NSW, Australia; Discipline of Child and Adolescent Health, Sydney Medical School, The University of Sydney, NSW, Australia.
J Pediatr. 2019 Feb;205:21-28.e2. doi: 10.1016/j.jpeds.2018.09.037. Epub 2018 Oct 23.
To assess health-related quality of life (HRQOL) in families of young children with complex congenital heart disease (CHD), and identify the demographic, clinical, and psychosocial factors that place these children and their mothers at greater risk of vulnerability.
This cross-sectional study took place from June 2015 to October 2016 at The Sydney Children's Hospitals Network Cardiac Service, Australia. Mothers of a child aged 1-5 years with either single ventricle CHD or CHD requiring neonatal biventricular repair were invited to participate. Eighty-seven mothers completed a suite of validated measures, including the Pediatric Quality of Life Inventory, which assessed the outcomes of child and maternal HRQOL.
Sixty percent of children with single ventricle CHD and 25% of children with biventricular repair had total Pediatric Quality of Life Inventory scores within the at-risk range. Lower child HRQOL was strongly associated with single ventricle CHD (β = -0.38; P < .001), physical comorbidity (β = -0.32; P = .001), feeding difficulties (β = -0.26; P = .008), and greater maternal psychological stress (β = -0.18; P = .045), accounting for 52% of the variance in child HRQOL. Lower maternal HRQOL was strongly associated with poorer family functioning (β = 0.61; P < .001), greater maternal psychological stress (β = -0.23; P = .004), child physical comorbidity (β = -0.17; P = .01), and a 'difficult' child temperament (β = -0.14; P = .01), accounting for 73% of the variance in maternal HRQOL.
Lower HRQOL is common in young children with complex CHD, particularly single ventricle CHD. Several predictors of HRQOL are potentially modifiable, offering possible pathways for prevention and early intervention. Routine screening is a necessary first step toward developing models of care to improve HRQOL in this population.
评估患有复杂先天性心脏病（CHD）的幼儿家庭的健康相关生活质量（HRQOL），并确定使这些儿童及其母亲面临更大脆弱性风险的人口统计学、临床和社会心理因素。
本横断面研究于 2015 年 6 月至 2016 年 10 月在澳大利亚悉尼儿童医院网络心脏科进行。邀请患有单心室 CHD 或需要新生儿双心室修复的 CHD 的 1-5 岁儿童的母亲参加。87 名母亲完成了一套经过验证的测量工具，包括儿科生活质量清单，该清单评估了儿童和母亲 HRQOL 的结果。
60%患有单心室 CHD 的儿童和 25%接受双心室修复的儿童的儿科生活质量清单总分处于风险范围内。儿童 HRQOL 较低与单心室 CHD（β=-0.38；P<.001）、身体合并症（β=-0.32；P=.001）、喂养困难（β=-0.26；P=.008）和母亲心理压力较大（β=-0.18；P=.045）密切相关，解释了儿童 HRQOL 变化的 52%。母亲 HRQOL 较低与家庭功能较差（β=0.61；P<.001）、母亲心理压力较大（β=-0.23；P=.004）、儿童身体合并症（β=-0.17；P=.01）和“困难”儿童气质（β=-0.14；P=.01）密切相关，解释了母亲 HRQOL 变化的 73%。
患有复杂 CHD 的幼儿 HRQOL 普遍较低，尤其是单心室 CHD。HRQOL 的几个预测指标是潜在可改变的，为预防和早期干预提供了可能的途径。常规筛查是制定改善该人群 HRQOL 的护理模式的必要第一步。
