Needs assessment in genetic testing education: A survey of parents of children with autism spectrum disorder in the united states

Abstract

Understanding parents' educational needs concerning genetic testing for their children with autism spectrum disorder (ASD) is important in developing tailored, evidence-based health education materials for clinical use. Since research is lacking in this area, to bridge the gap, we examined genetic testing education needs using a nationwide sample of parents of biological children with ASD in the United States. Prospective participants were recruited from the interactive autism network, and 552 parents of biological children with ASD completed the online survey. Most participants (73.7%) were interested in receiving health education about genetic testing. Yet, the majority of them (64.7%) reported that they did not receive the information needed from physicians. Parents who identified as racial/ethnic minorities (P = 0.029), who had an education degree below college (P = 0.002), or displayed low/no awareness of genetic testing (P = 0.003) were more interested in receiving health education regarding genetic testing. Parents' most desired topics for health education include the accuracy of genetic testing (88.4%), cost (85.9%), relevant benefits of such testing (83.8%), testing procedure (77.8%), eligibility to undergo genetic testing for their children with ASD (62.4%), potential harms caused by genetic testing (56.1%), previous use and experience among individuals affected by ASD (50.8%), and confidentiality issues (48.0%). Furthermore, web-based education was the preferable approach (85.4%). Our findings can help develop health education programs and/or materials regarding genetic testing for parents and physicians to facilitate better physician-parent communication and assist parents in making informed medical decisions regarding genetic testing.Lay Summary: This study examined educational needs on genetic testing among 552 American parents of children with autism spectrum disorder (ASD). Results showed that most parents expressed interests in receiving health education regarding genetic testing (73.7%) and favored online education resources (85.4%). Preferred topics included accuracy, cost, and testing benefits. Our findings can help develop genetic testing related health education programs and materials for parents of children with ASD.

Predictors of empowerment in parents of children with autism and related neurodevelopmental disorders who are undergoing genetic testing

“…Studies have shown the importance parents place on information about genetic testing (Li et al, 2016 ; Zhao et al, 2019b ). Zhao et al ( 2019 ) demonstrated that most parents (73.7%) of a child with ASD, who was undergoing genetic testing, were interested in receiving health education on genetic testing (Zhao et al, 2019b ).…”

Health knowledge of women with a fragile X premutation: Improving understanding with targeted educational material

“…Some participants indicated that their preferred modes would be e‐book and short online videos. These modes of education were also found to be preferable by clients for other health topics (e.g., Hernan et al, 2019; Zhao et al, 2019). However, the effectiveness of each medium needs to be tested.…”

Genetische Risikofaktoren und ihre Auswirkungen auf die neurale Entwicklung bei Autismus-Spektrum-Störungen

“…Zahlreiche Eltern von Kindern mit ASS sowie auch Geschwister stellen die Frage nach dem Wiederholungsrisiko, sodass auch primär psychiatrisch tätige Personen zumindest grundsätzlich darüber Bescheid wissen sollten. Deutsche und internationale Studien haben sowohl ein hohes Interesse der Angehörigen als auch die Notwendigkeit einer grundlegenden Psychoedukation hinsichtlich genetischer Grundbegriff e und Schlussfolgerungen aus genetischen Tests gezeigt (Mey, Jenke & Borusiak, 2019;Zhao et al, 2019). Hinsichtlich vererbter monogener Erkrankungen sind die wesentliche Aspekte, die das Wiederholungsrisiko beeinfl ussen, die autosomal rezessive und dominante Vererbung sowie X-chromosomal rezessive und dominant vererbte Varianten.…”