Zhao Shixi, Chen Wei-Ju, Kwok Oi-Man, Dhar Shweta U, Eble Tanya N, Tseng Tung-Sung, Chen Lei-Shih
Department of Health, Exercise & Sports Sciences, University of New Mexico, Albuquerque, NM 87131, USA.
Department of Psychology, the University of Texas of the Permian Basin, Odessa, TX 79762, USA.
Int J Environ Res Public Health. 2021 Mar 23;18(6):3323. doi: 10.3390/ijerph18063323.
Due to the increased prevalence of Autism Spectrum Disorder (ASD), more children with ASD may be referred for genetic testing. It is important to develop a tool to help parents consider the benefits and drawbacks of genetic testing for ASD before pursuing genetic testing for children with ASD. We developed the first theory-based survey-Perceptions of ASD Genetic Testing Survey (POAGTS), as a tool to assist healthcare providers to better understand parents' perceptions and concerns regarding ASD genetic testing. The psychometric properties of POAGTS were first pre-tested and then formally tested with 308 parents of children with ASD who had not decided whether to pursue genetic testing for their children diagnosed with ASD. Findings suggest that the eight scales of the POAGTS were psychometrically sound, and had acceptable data reliability and validity. Additional research with various samples, such as parents of children with ASD who belong to diverse racial/ethnic and socioeconomic groups, is warranted in the future to determine whether the POAGTS is applicable to these particular groups. Condensing and refining this tool to a shorter, more user-friendly version is also recommended for future research.
由于自闭症谱系障碍（ASD）的患病率上升，可能会有更多患有ASD的儿童被转诊进行基因检测。在为患有ASD的儿童进行基因检测之前，开发一种工具来帮助家长权衡基因检测的利弊非常重要。我们开发了首个基于理论的调查——自闭症基因检测认知调查（POAGTS），作为一种工具，以协助医疗保健提供者更好地了解家长对ASD基因检测的认知和担忧。POAGTS的心理测量特性首先进行了预测试，然后对308名患有ASD儿童的家长进行了正式测试，这些家长尚未决定是否要为被诊断患有ASD的孩子进行基因检测。研究结果表明，POAGTS的八个量表在心理测量上是合理的，并且具有可接受的数据可靠性和有效性。未来有必要对各种样本进行进一步研究，例如属于不同种族/民族和社会经济群体的患有ASD儿童的家长，以确定POAGTS是否适用于这些特定群体。未来研究还建议将该工具浓缩和提炼成一个更简短、更便于使用的版本。
