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埃及肾病综合征患儿的健康相关生活质量。

Health-related quality of life in Egyptian children with nephrotic syndrome.

机构信息

Pediatric Nephrology Unit, Faculty of Medicine, Mansoura University Children's Hospital, Mansoura University, Mansoura, 35561, Egypt.

Public Health and Community Department, Faculty of Medicine, Mansoura University, Mansoura, Egypt.

出版信息

Qual Life Res. 2020 Aug;29(8):2185-2196. doi: 10.1007/s11136-020-02438-0. Epub 2020 Feb 3.

Abstract

PURPOSE

This research aimed to evaluate Quality of life (QoL) in Egyptian children with idiopathic Nephrotic syndrome (INS) in comparison to healthy children and children with chronic non-renal illnesses.

METHODS

In this questionnaire-based study, 300 children were included, 100 with INS and 2 matched control groups: healthy group, and chronic non-renal illness group. QoL was assessed using the Pediatric Quality of Life Inventory (PedsQL™ 4.0 Generic Core Scales) and the Generic Children's QoL Measure (GCQ).

RESULTS

All mean scores of PedsQL domains in INS group were significantly higher than chronic non-renal illness group and significantly lower than the healthy control group (p =  < 0.001) for all and similar results reported also regarding GCQ scores in INS compared to diseased (p = 0.02) and healthy controls (p = 0.006). Steroid-resistant NS group had lowest scores in all domains (p =  < 0.001) compared to other clinical phenotypes of NS group. The long duration of illness, higher number of relapses, high cumulative steroid dose, and high number of medications used were associated with lower PedsQL and GCQ scores (p < 0.001 for all) CONCLUSION: This is the first study to asses QoL in Egyptian children with INS and correlates QoL scores to clinical phenotypes and complications of the disease. Egyptian children with INS need strenuous efforts from pediatricians and psychiatrists to improve QoL. Both PedsQL™ 4.0 scale and GCQ are simple, convenient, and can be used in daily clinical practice to asses QoL in children with NS.

摘要

目的

本研究旨在评估埃及特发性肾病综合征(INS)患儿的生活质量(QoL),并将其与健康儿童和患有慢性非肾脏疾病的儿童进行比较。

方法

在这项基于问卷调查的研究中,共纳入 300 名儿童,其中 100 名为 INS 患儿,另外 2 个匹配的对照组:健康组和慢性非肾脏疾病组。使用儿童生活质量问卷(PedsQL™ 4.0 通用核心量表)和通用儿童生活质量量表(GCQ)评估 QoL。

结果

INS 组所有 PedsQL 领域的平均得分均显著高于慢性非肾脏疾病组,显著低于健康对照组(p<0.001),GCQ 评分在 INS 组与患病组(p=0.02)和健康对照组(p=0.006)相比也有类似结果。激素抵抗性 NS 组在所有领域的得分均最低(p<0.001),与 NS 组的其他临床表型相比。疾病持续时间长、复发次数多、累积激素剂量高、使用药物种类多与 PedsQL 和 GCQ 评分降低相关(p<0.001)。

结论

这是第一项评估埃及 INS 患儿 QoL 并将 QoL 评分与疾病临床表型和并发症相关联的研究。埃及 INS 患儿需要儿科医生和精神科医生的大力努力来改善 QoL。PedsQL™ 4.0 量表和 GCQ 简单、方便,可在日常临床实践中用于评估 NS 患儿的 QoL。

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