Department of Biology, Indiana University-Purdue University Indianapolis, Indianapolis, IN, United States.
Department of Psychology, Indiana University-Purdue University Indianapolis, Indianapolis, IN, United States.
Complement Ther Med. 2019 Aug;45:234-241. doi: 10.1016/j.ctim.2019.07.002. Epub 2019 Jul 2.
Usage of and views concerning alternative therapies in the DS community are not well documented. Some positive effects of green tea extracts (GTE) containing Epigallocathechin-3-gallate (EGCG) have been reported in individuals with DS and DS mouse models, but minimal improvements or detrimental effects of pure EGCG treatment have been reported in DS mouse models. Given the uncertainty about the effectiveness of these supplements, the goal of this study was to determine the relative prevalence of and attitudes about GTE/EGCG treatments among DS caregivers.
An anonymous survey about attitudes and usage of GTE/EGCG in individuals with DS was completed by caregivers of these individuals.
GTE/EGCG treatment was provided by 18% of responding caregivers who were mostly younger, highly educated, and utilized scientific sources and other parents to influence their decision to use GTE/EGCG. Individuals with DS who received GTE/EGCG were characterized as less severely disabled. Most caregivers who did not give GTE/EGCG reported concerns about potential side effects and lack of effectiveness. Few caregivers consulted with medical providers about GTE/EGCG usage.
These results demonstrate a need for communication between caregivers, medical providers, and scientists about potential benefits and risks for adverse effects of GTE, EGCG, and other nutritional supplements in individuals with DS.
有关唐氏综合征(DS)患者群体中替代疗法的使用情况和观点尚未得到充分记录。一些研究报告称,绿茶提取物(GTE)中含有的表没食子儿茶素没食子酸酯(EGCG)对 DS 患者和 DS 小鼠模型具有积极影响,但在 DS 小鼠模型中,纯 EGCG 治疗的改善效果甚微或产生了不良影响。鉴于这些补充剂的有效性尚不确定,本研究旨在确定 DS 患者护理人员对 GTE/EGCG 治疗的相对接受程度和态度。
通过对这些个体的护理人员进行一项关于 DS 患者 GTE/EGCG 态度和使用情况的匿名调查,来确定 GTE/EGCG 治疗的相对流行率和态度。
18%的回应护理人员提供了 GTE/EGCG 治疗,他们大多较为年轻、受过高等教育,并且利用科学资源和其他家长来影响他们使用 GTE/EGCG 的决定。接受 GTE/EGCG 治疗的 DS 个体表现出较轻的残疾程度。大多数未给予 GTE/EGCG 治疗的护理人员报告称担心可能存在副作用和缺乏疗效。很少有护理人员就 GTE/EGCG 的使用情况咨询过医疗服务提供者。
这些结果表明,需要在护理人员、医疗服务提供者和科学家之间就 GTE、EGCG 和其他营养补充剂对 DS 个体的潜在益处和不良反应风险进行沟通。