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沙特阿拉伯吉达阿卜杜勒阿齐兹国王大学医院患有和未患有先天性心脏病的唐氏综合征患者的生活质量

Quality of Life Among Down Syndrome Patients With and Without Congenital Heart Disease at King Abdulaziz University Hospital, Jeddah, Saudi Arabia.

作者信息

Alhaddad Fatimah A, Alkhushi Naif A, Alharbi Amal M, Al Talib Sarah A, Sultan Sarah M, Bahawi Yara O

机构信息

Medicine, King Abdulaziz University Faculty of Medicine, Jeddah, SAU.

Department of Pediatrics, Ministry of National Guard Health Affairs, King Abdulaziz Medical City, Jeddah, SAU.

出版信息

Cureus. 2023 Jan 9;15(1):e33553. doi: 10.7759/cureus.33553. eCollection 2023 Jan.

Abstract

Background Congenital heart diseases (CHD) are common in Down syndrome patients who will often have additional anomalies, in which the presence of them and their management are expected to impact their quality of life (QoL). There are limited studies trying to evaluate the impact of CHD on the QoL in children with Down syndrome. Methods The present study comprised 97 Down syndrome children. The children's parents responded to phone interviews filling out TNO-AZL (Netherlands Organisation for Applied Scientific Research Academic Medical Centre) Preschool Quality of Life (TAPQOL) and TNO-AZL Child Quality of Life Parent Form (TACQOL-PF) questionnaires. Children were divided into two groups according to their age: group A (one to five years) and group B (six to 15 years). The results were analyzed using Statistical Package for Social Sciences (SPSS) software, version 21 (IBM Corp., Armonk, NY). Results CHD negatively affected motor skills in younger but not older children. All other QoL-related parameters were unaffected by CHD. Conclusion Down syndrome children with CHD demonstrated similar QoL to Down syndrome children without CHD, with the exception of having a lower motor outcome as infants/toddlers. This difference improved with time and did not exist in older children.

摘要

背景

先天性心脏病(CHD)在唐氏综合征患者中很常见,这些患者通常还会有其他异常情况,而这些异常情况的存在及其处理方式预计会影响他们的生活质量(QoL)。目前试图评估CHD对唐氏综合征患儿生活质量影响的研究有限。方法:本研究纳入了97名唐氏综合征患儿。患儿的父母通过电话访谈填写了荷兰应用科学研究组织学术医学中心(TNO-AZL)的学前生活质量(TAPQOL)问卷和TNO-AZL儿童生活质量家长问卷(TACQOL-PF)。根据年龄将患儿分为两组:A组(1至5岁)和B组(6至15岁)。使用社会科学统计软件包(SPSS)21版(IBM公司,纽约州阿蒙克)对结果进行分析。结果:CHD对年幼儿童的运动技能有负面影响,但对年长儿童没有影响。所有其他与生活质量相关的参数均不受CHD的影响。结论:患有CHD的唐氏综合征患儿与未患CHD的唐氏综合征患儿的生活质量相似,只是婴幼儿期的运动结果较低。这种差异会随着时间改善,在年长儿童中不存在。

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