Literature DB >> 31542846

Genetic Testing Experiences Among Parents of Children with Autism Spectrum Disorder in the United States.

Shixi Zhao1, Wei-Ju Chen2, Shweta U Dhar3, Tanya N Eble3, Oi-Man Kwok4, Lei-Shih Chen5.   

Abstract

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.

Entities:  

Keywords:  Autism spectrum disorder; Experience; Genetic testing; Parents; Utilization

Mesh:

Year:  2019        PMID: 31542846     DOI: 10.1007/s10803-019-04200-z

Source DB:  PubMed          Journal:  J Autism Dev Disord        ISSN: 0162-3257


  49 in total

1.  Genetic susceptibility testing from a stress and coping perspective.

Authors:  Holly C Gooding; Kurt Organista; Jeffrey Burack; Barbara Bowles Biesecker
Journal:  Soc Sci Med       Date:  2005-09-28       Impact factor: 4.634

2.  Parents' perceptions of the usefulness of chromosomal microarray analysis for children with autism spectrum disorders.

Authors:  Marian Reiff; Ellen Giarelli; Barbara A Bernhardt; Ebony Easley; Nancy B Spinner; Pamela L Sankar; Surabhi Mulchandani
Journal:  J Autism Dev Disord       Date:  2015-10

3.  Genetic testing and corresponding services among individuals with autism spectrum disorder (ASD).

Authors:  Michael L Cuccaro; Kayla Czape; Michael Alessandri; Joycelyn Lee; Abigail Rupchock Deppen; Elise Bendik; Nicole Dueker; Laura Nations; Margaret Pericak-Vance; Susan Hahn
Journal:  Am J Med Genet A       Date:  2014-08-04       Impact factor: 2.802

4.  Underutilization of genetics services for autism: the importance of parental awareness and provider recommendation.

Authors:  Kimberly Vande Wydeven; Andrea Kwan; Antonio Y Hardan; Jonathan A Bernstein
Journal:  J Genet Couns       Date:  2012-03-14       Impact factor: 2.537

5.  The relationship between the neuromodulator adenosine and behavioral symptoms of autism.

Authors:  Susan A Masino; Masahito Kawamura; Louisa M Plotkin; Julia Svedova; Francis J DiMario; Inge-Marie Eigsti
Journal:  Neurosci Lett       Date:  2011-06-15       Impact factor: 3.046

6.  Comorbidity clusters in autism spectrum disorders: an electronic health record time-series analysis.

Authors:  Finale Doshi-Velez; Yaorong Ge; Isaac Kohane
Journal:  Pediatrics       Date:  2013-12-09       Impact factor: 7.124

7.  A qualitative study of healthcare providers' perspectives on the implications of genome-wide testing in pediatric clinical practice.

Authors:  Marian Reiff; Rebecca Mueller; Surabhi Mulchandani; Nancy B Spinner; Reed E Pyeritz; Barbara A Bernhardt
Journal:  J Genet Couns       Date:  2013-09-14       Impact factor: 2.537

8.  Prevalence of autism in a US metropolitan area.

Authors:  Marshalyn Yeargin-Allsopp; Catherine Rice; Tanya Karapurkar; Nancy Doernberg; Coleen Boyle; Catherine Murphy
Journal:  JAMA       Date:  2003-01-01       Impact factor: 56.272

Review 9.  Epilepsy in patients with autism: links, risks and treatment challenges.

Authors:  Frank Mc Besag
Journal:  Neuropsychiatr Dis Treat       Date:  2017-12-18       Impact factor: 2.570

10.  Utilization of genetic testing among children with developmental disabilities in the United States.

Authors:  Bridget Kiely; Sujit Vettam; Andrew Adesman
Journal:  Appl Clin Genet       Date:  2016-07-11
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  6 in total

1.  Autism Spectrum Disorder and Genetic Testing: Parents' Attitudes-Data from Turkish Sample.

Authors:  Aynur Bütün Ayhan; Utku Beyazıt; Şenay Topuz; Çağla Zeynep Tunay; Maryam Nazhad Abbas; Serkan Yılmaz
Journal:  J Autism Dev Disord       Date:  2020-11-21

2.  Factors Affecting Family Compliance with Genetic Testing of Children Diagnosed with Autism Spectrum Disorder.

Authors:  Yonah Hendel; Gal Meiri; Hagit Flusser; Analya Michaelovski; Ilan Dinstein; Idan Menashe
Journal:  J Autism Dev Disord       Date:  2021-04

3.  A Next Generation Sequencing-Based Protocol for Screening of Variants of Concern in Autism Spectrum Disorder.

Authors:  Jie Huang; Jun Liu; Ruiyi Tian; Kevin Liu; Patrick Zhuang; Hannah Tayla Sherman; Christoph Budjan; Michelle Fong; Min-Seo Jeong; Xue-Jun Kong
Journal:  Cells       Date:  2021-12-21       Impact factor: 6.600

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

Authors:  Iskra Peltekova; Afiqah Yusuf; Jennifer Frei; Tal Savion-Lemieux; Ridha Joober; Jennifer Howe; Stephen W Scherer; Mayada Elsabbagh
Journal:  Mol Genet Genomic Med       Date:  2021-10-20       Impact factor: 2.183

5.  Access, utilization, and awareness for clinical genetic testing in autism spectrum disorder in Sweden: A survey study.

Authors:  Anna Hellquist; Kristiina Tammimies
Journal:  Autism       Date:  2021-12-28

Review 6.  Mini-Review: Genetic Literacy and Engagement With Genetic Testing for Autism Spectrum Disorder.

Authors:  India D Little; Chris Gunter
Journal:  Front Genet       Date:  2021-06-29       Impact factor: 4.599

  6 in total

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