Health-related quality of life of caregivers of children with congenital diaphragmatic hernia.
Health-related quality of life of caregivers of children with congenital diaphragmatic hernia.
复制标题
先天性膈疝儿童护理人员的健康相关生活质量。
DOI：
10.1002/ppul.25339
复制
发表时间：
2021
影响因子：
3.1
通讯作者：
Jelin,EricB
中科院分区：
文献类型：
--
作者：
AlBaroudi,Sahar;Collaco,JosephM;Nies,MelanieK;Rice,JessicaL;Jelin,EricB
先天性腹股沟疝（CDH）是一种与显著的死亡率和发病率相关的先天性缺陷。我们试图评估健康相关的生活质量（HRQoL）的照顾者的婴儿/儿童CDH和确定危险因素较差HRQoL.MethodsFamilies招募从CDH特定的门诊诊所和HRQoL进行了评估，通过一个有效的HRQoL工具（PedsQL ™家庭影响模块）在几个时间点。混合模型被用来确定人口和临床因素与较差的HRQoL为carefuls.ResultsA共招募了29名受试者，平均年龄为2.4 ± 2.3岁。就缺损大小而言，6.9%为A型，37.9%为B型，31.0%为C型，24.1%为D型。首次就诊时的平均HRQoL评分为67.6 ± 18.3;报告的评分范围为0 - 100，评分越高代表报告的生活质量越高。较低的家庭收入中位数（p= 0.021）和使用体外膜氧合（p= 0.013）与较差的HRQoL评分相关。呼吸道症状的存在降低了照顾者的HRQoL，包括日间症状（p< .001）和夜间症状（p< .001）。虽然急诊室就诊与HRQoL下降无关，但住院率（p= 0.002）和CDH再手术率（p<0.001）were.ConclusionOur study found a reduced quality of life associated with socioeconomic factors and severity of ongoing disease.需要进一步的研究来证实这些发现，并确定帮助家庭科普这种先天性疾病慢性化的策略。
ObjectiveCongenital diaphragmatic hernia (CDH) is a congenital defect associated with significant mortality and morbidity. We sought to assess the health‐related quality of life (HRQoL) for caregivers of infants/children with CDH and determine risk factors for poorer HRQoL.MethodsFamilies were recruited from a CDH‐specific outpatient clinic and HRQoL was assessed by a validated HRQoL instrument (PedsQLTM Family Impact Module) at several time points. Mixed models were used to identify demographic and clinical factors associated with worse HRQoL for caregivers.ResultsA total of 29 subjects were recruited at a mean age of 2.4 ± 2.3 years. In terms of defect size, 6.9% had a Type A, 37.9% a Type B, 31.0% a Type C, and 24.1% a Type D. The mean HRQoL score at the first encounter was 67.6 ± 18.3; scores are reported from 0 to 100 with higher scores representing the higher reported quality of life. Lower median household incomes (p= .021) and use of extracorporeal membrane oxygenation (p= .013) were associated with poorer HRQoL scores. The presence of respiratory symptoms decreased HRQoL for caregivers, including daytime symptoms (p< .001) and nighttime symptoms (p< .001). While emergency department visits were not associated with a decrease in HRQoL, hospital admissions (p= .002), and reoperations for CDH (p< .001) were.ConclusionOur study found a reduced quality of life associated with socioeconomic factors and severity of ongoing disease. Further study is needed to confirm these findings and identify strategies for aiding families cope with the chronicity of this congenital disease.