Psychometric Properties of the POAGTS: A Tool for Understanding Parents' Perceptions Regarding Autism Spectrum Disorder Genetic Testing.

Shixi Zhao,Wei-Ju Chen,Shweta U Dhar,Lei-Shih Chen,Oi-Man Kwok,Tanya N Eble,Tung-Sung Tseng

doi:10.3390/ijerph18063323

Abstract

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.

Highlights

Autism Spectrum Disorder (ASD) is an umbrella term for a group of neurodevelopmental disabilities [1] with a trend of increasing prevalence in the United States (U.S.) [2].Studies have shown that genetics is one of the main factors contributing to ASD, as hundreds of genes have been identified to be associated with ASD [3,4,5,6,7]
A Kaiser–Meyer–Olkin (KMO) test was conducted to determine the appropriateness of exploratory factor analysis (EFA) for each scale of the Perceptions of ASD Genetic Testing Survey (POAGTS)
This scale consisted of four items that all loaded onto a single factor and accounted for 64.80% of the total variance

Summary

Introduction

Autism Spectrum Disorder (ASD) is an umbrella term for a group of neurodevelopmental disabilities [1] with a trend of increasing prevalence in the United States (U.S.) [2].Studies have shown that genetics is one of the main factors contributing to ASD, as hundreds of genes have been identified to be associated with ASD [3,4,5,6,7]. Genetic testing for ASD is available in clinical practice. Several leading medical organizations, including the American Academy of Pediatrics [8,9], American Academy of Child and Adolescent Psychiatry [10], American Academy of Neurology [11], and American College of Medical Genetics and Genomics [12], have established clinical guidelines and recommendations for offering genetic testing for children diagnosed with ASD. Several different genetic tests are available [13,14,15,16]. Genetic testing for ASD could be beneficial for both children diagnosed with ASD and their parents. For children with ASD, genetic testing may help identify the etiology of ASD and assist in creating

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