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唐氏综合征儿童的膳食补充剂使用模式。

Patterns of Dietary Supplement Use in Children with Down Syndrome.

机构信息

Children's National Rare Disease Institute, Children's National Health System, Washington, DC.

出版信息

J Pediatr. 2018 Oct;201:100-105.e30. doi: 10.1016/j.jpeds.2018.05.022. Epub 2018 Jun 28.

Abstract

OBJECTIVE

To determine the frequency of dietary supplement use for children with Down syndrome, and to obtain additional descriptive data regarding the age of initial treatment, cost, perceived benefits, and disclosure of use to the pediatrician.

STUDY DESIGN

An anonymous questionnaire in English and Spanish was created for parents of children under age 18 years with Down syndrome. Surveys were completed in our clinic, or accessed on a number of Down syndrome-related websites.

RESULTS

A total of 1167 responses were completed and analyzed. Forty nine percent of responders currently/previously gave their child supplement(s). The average child received 3 supplements (ranging from 1-18). Although Nutrivene, curcumin, and green tea extract were most common, over 150 different products were reported. Supplementation began most often in infancy, generally between age 4 and 6 months. Average cost was $90.53/month. Overall, 87% of users noted improvement, mainly in speech, immunity, and attention; 17% reported side-effects, predominantly gastrointestinal disturbance. Lack of improvement and cost were the main reasons for discontinuation. Most parents learned of supplements through a parent group or friend. In almost 20%, the pediatrician was unaware of the supplement use.

CONCLUSIONS

Almost one-half of parents surveyed administer or have administered supplement(s) to their children with Down syndrome. Many of the supplements have concerning ingredient profiles and are given to children too young to articulate potential ill effects. Providers need to be aware of these products and question families about their use.

摘要

目的

确定唐氏综合征儿童使用膳食补充剂的频率,并获得有关初始治疗年龄、成本、感知益处以及向儿科医生披露使用情况的其他描述性数据。

研究设计

为年龄在 18 岁以下的唐氏综合征儿童的父母创建了一份英文和西班牙文的匿名问卷。调查在我们的诊所完成,或在一些唐氏综合征相关网站上进行。

结果

共完成并分析了 1167 份回复。49%的应答者目前/曾经给孩子服用补充剂。平均每个孩子接受 3 种补充剂(范围为 1-18 种)。尽管 Nutrivene、姜黄素和绿茶提取物最为常见,但报告的产品超过 150 种。补充剂通常在婴儿期开始,一般在 4 至 6 个月之间。平均每月费用为 90.53 美元。总体而言,87%的使用者注意到改善,主要在言语、免疫和注意力方面;17%报告有副作用,主要是胃肠道不适。缺乏改善和成本是停止使用的主要原因。大多数父母通过家长团体或朋友了解补充剂。近 20%的家长表示,儿科医生不知道他们在给孩子使用补充剂。

结论

近一半接受调查的父母为他们的唐氏综合征儿童服用或曾经服用过补充剂。许多补充剂的成分令人担忧,而且给年龄太小而无法表达潜在不良反应的儿童服用。提供者需要了解这些产品,并询问家庭有关其使用情况。

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