Department of Health, Exercise & Sports Sciences, University of New Mexico, Albuquerque, NM, USA.
Department of Psychology, The University of Texas of the Permian Basin, Odessa, TX, USA.
J Autism Dev Disord. 2019 Dec;49(12):4821-4833. doi: 10.1007/s10803-019-04200-z.
This study examined the experiences of Autism Spectrum Disorder (ASD) genetic testing among parents of children with ASD. A nationwide sample of 552 parents of children with ASD completed an online survey. Nearly one-quarter (22.5%) of the parents reported that their affected children had undergone ASD genetic testing. The testing utilization was associated with awareness of ASD genetic testing and whether information was received from healthcare providers. Among parents whose children with ASD were tested, 37.6% had negative experiences, which mainly due to lack of perceived testing benefits to their affected children and unpleasant testing experiences with healthcare providers. To provide better healthcare services, it is critical to ensure parents understand the purposes, benefits, and results of ASD genetic testing.
本研究调查了自闭症谱系障碍（ASD）基因检测在 ASD 患儿父母中的体验。全国范围内的 552 名 ASD 患儿父母完成了一项在线调查。近四分之一（22.5%）的父母报告称其患病子女接受了 ASD 基因检测。检测利用率与对 ASD 基因检测的认识以及是否从医疗保健提供者那里获得信息有关。在对其子女进行 ASD 基因检测的父母中，37.6%的父母有负面体验，主要是因为他们认为检测对其患病子女没有益处，并且与医疗保健提供者的检测体验不愉快。为了提供更好的医疗服务，至关重要的是要确保父母了解 ASD 基因检测的目的、益处和结果。
