A New Perspective on the Quality of Life of Children with Glycogen Storage Diseases.

IF 1.3 Q3 PEDIATRICS Pediatric Gastroenterology, Hepatology & Nutrition Pub Date : 2022-07-01 Epub Date: 2022-07-06 DOI:10.5223/pghn.2022.25.4.321

Gihan Ahmed Sobhy, Mortada El-Shabrawi, Heba Safar

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引用次数: 2

Abstract

Purpose: This study aimed to assess the quality of life (QoL) of children with glycogen storage disease (GSD) and their parents and to determine the impact of myopathies.

Methods: A prospective case-control study was conducted at the Cairo University Children's Hospital and National Liver Institute, Menoufia University. A promising new style of questionnaire called the Stark Quality of Life Questionnaire was used to assess the quality of life.

Results: Fifty-two children diagnosed with GSD (cases) and 55 age- and sex-matched healthy children (controls) were included. A statistically significant difference was found between cases and controls regarding food intake; mental behavior parameters such as mood, energy, and social contact; and physical behavior parameters such as running and tying shoelaces. Children with myopathies had significantly lower QoL scores in most of the parameters.

Conclusion: GSDs alter children and their parents' mental and physical abilities. Lower QoL scores were detected in children with both skeletal myopathy and cardiomyopathy, but the difference was not statistically significant when compared with the children without myopathies.

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糖原积存症患儿生活质量的新视角

目的:本研究旨在评估糖原储存病(GSD)患儿及其父母的生活质量(QoL)，并确定肌病对生活质量的影响。方法:在开罗大学儿童医院和Menoufia大学国家肝脏研究所进行了一项前瞻性病例对照研究。一种很有前途的新型问卷——斯塔克生活质量问卷被用来评估生活质量。结果:纳入52例诊断为GSD的儿童(病例)和55例年龄和性别匹配的健康儿童(对照组)。在食物摄入方面，病例和对照组之间存在统计学上的显著差异;心理行为参数，如情绪、精力和社会交往;身体行为参数，比如跑步和系鞋带。肌病患儿在大多数参数上的生活质量评分明显较低。结论:gsd改变了儿童及其父母的身心能力。骨骼肌病和心肌病患儿的生活质量评分均较低，但与无骨骼肌病患儿相比差异无统计学意义。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Pediatric Gastroenterology, Hepatology & Nutrition PEDIATRICS-

CiteScore

3.90

自引率

0.00%

发文量

期刊介绍： Pediatric Gastroenterology, Hepatology and Nutrition (Pediatr Gastroenterol Hepatol Nutr), an official journal of The Korean Society of Pediatric Gastroenterology, Hepatology and Nutrition, is issued bimonthly and published in English. The aim of Pediatr Gastroenterol Hepatol Nutr is to advance scientific knowledge and promote child healthcare by publishing high-quality empirical and theoretical studies and providing a recently updated knowledge to those practitioners and scholars in the field of pediatric gastroenterology, hepatology and nutrition. Pediatr Gastroenterol Hepatol Nutr publishes review articles, original articles, and case reports. All of the submitted papers are peer-reviewed. The journal covers basic and clinical researches on molecular and cellular biology, pathophysiology, epidemiology, diagnosis, and treatment of all aspects of pediatric gastrointestinal diseases and nutritional health problems.