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泰国唐氏综合征患儿的生活质量与综合健康监测

Quality of life and comprehensive health supervision for children with Down syndrome in Thailand.

作者信息

Rojnueangnit Kitiwan, Khaosamlee Penrawee, Chunsuwan Issarapa, Vorravanpreecha Nattariya, Lertboonnum Tanayoot, Rodjanadit Rungrote, Sriplienchan Pak

机构信息

Department of Pediatrics, Faculty of Medicine, Thammasat University, 99 Moo 18 Phahonyothin Road, Khlong Luang, Pathumthani, 12120, Thailand.

Department of Pediatrics, Amnatcharoen Hospital, Amnat Charoen, Thailand.

出版信息

J Community Genet. 2020 Jul;11(3):351-358. doi: 10.1007/s12687-020-00458-4. Epub 2020 Feb 22.

Abstract

Children with Down syndrome often require several specialty doctors and multidisciplinary teams for their associated anomalies. This may impact their quality of life and creates gaps in treatment monitoring. No studies have yet been conducted in Thailand to measure their quality of life and level of comprehensive health supervision. Therefore, we aimed to study the quality of life among children with Down syndrome and determine if they receive comprehensive health supervision for their condition. In this descriptive research, data were collected from a medical record review of children with Down syndrome during a 1-year period in our Pediatric Outpatient Clinic; 50 children and 39 caregivers participated. Mean total quality of life score of the children was 67.9/100 points. The children had the highest scores (73.6 ± 12.8) in emotional functioning and the lowest (57.2 ± 25.6) in cognitive functioning. It appears that the quality of life may be lower in Down syndrome patients than in Thai children without it. Regarding health supervision, all 50 were screened for thyroid function, and 48 received cardiac evaluations. However, only 17 (34%) received "complete basic assessment" of 5 screening combinations with developmental evaluations and growth monitoring. Furthermore, none received "comprehensive" evaluations for all recommended conditions. While these findings show a need for health supervision improvement for children with Down syndrome within our hospital, they may also be indicative for most care facilities throughout Thailand.

摘要

患有唐氏综合征的儿童因其相关异常情况通常需要多位专科医生和多学科团队的治疗。这可能会影响他们的生活质量,并在治疗监测方面产生差距。泰国尚未开展任何研究来衡量他们的生活质量和综合健康监管水平。因此,我们旨在研究唐氏综合征患儿的生活质量,并确定他们是否因其病情接受了全面的健康监管。在这项描述性研究中,我们从儿科门诊为期1年的唐氏综合征患儿病历审查中收集数据;50名儿童和39名照顾者参与了研究。儿童的平均生活质量总得分是67.9/100分。儿童在情感功能方面得分最高(73.6±12.8),在认知功能方面得分最低(57.2±25.6)。唐氏综合征患者的生活质量似乎可能低于没有患该病的泰国儿童。关于健康监管,所有50名儿童都接受了甲状腺功能筛查,48名接受了心脏评估。然而,只有17名(34%)接受了包括发育评估和生长监测在内的5项筛查组合的“完整基本评估”。此外,没有一名儿童接受针对所有推荐病症的“全面”评估。虽然这些研究结果表明我们医院需要改善对唐氏综合征患儿的健康监管,但它们可能也适用于泰国的大多数护理机构。

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本文引用的文献

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Caregiver-Reported Quality of Life in Youth with Down Syndrome.唐氏综合征青少年的照料者报告的生活质量
J Pediatr. 2017 Oct;189:98-104.e1. doi: 10.1016/j.jpeds.2017.06.073. Epub 2017 Jul 24.
3
Associated congenital anomalies among cases with Down syndrome.唐氏综合征病例中的相关先天性异常。
Eur J Med Genet. 2015 Dec;58(12):674-80. doi: 10.1016/j.ejmg.2015.11.003. Epub 2015 Nov 11.
6
Health supervision for children with Down syndrome.对唐氏综合征患儿的健康监督。
Pediatrics. 2011 Aug;128(2):393-406. doi: 10.1542/peds.2011-1605. Epub 2011 Jul 25.
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Understanding physicians' attitudes toward people with Down syndrome.理解医生对唐氏综合征患者的态度。
Am J Med Genet A. 2011 Jun;155A(6):1258-63. doi: 10.1002/ajmg.a.34039. Epub 2011 May 13.
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Epidemiology of Down syndrome.唐氏综合征的流行病学
Ment Retard Dev Disabil Res Rev. 2007;13(3):221-7. doi: 10.1002/mrdd.20157.

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