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

Abstract Background There is limited empirical data quantifying the utility of genetic testing for families of children with autism spectrum disorder (ASD) or related neurodevelopmental disorders (NDD). We assessed the utility of clinical chromosomal microarray analysis (CMA), defined by diagnostic...

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Autores principales:	Iskra Peltekova, Afiqah Yusuf, Jennifer Frei, Tal Savion‐Lemieux, Ridha Joober, Jennifer Howe, Stephen W. Scherer, Mayada Elsabbagh
Formato:	article
Lenguaje:	EN
Publicado:	Wiley 2021
Materias:	autism spectrum disorder empowerment genetic testing neurodevelopmental disorders Genetics QH426-470
Acceso en línea:	https://doaj.org/article/930e915858d144da895c557e7b0b05c7
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spelling	oai:doaj.org-article:930e915858d144da895c557e7b0b05c72021-11-21T19:38:53ZPredictors of empowerment in parents of children with autism and related neurodevelopmental disorders who are undergoing genetic testing2324-926910.1002/mgg3.1803https://doaj.org/article/930e915858d144da895c557e7b0b05c72021-11-01T00:00:00Zhttps://doi.org/10.1002/mgg3.1803https://doaj.org/toc/2324-9269Abstract Background There is limited empirical data quantifying the utility of genetic testing for families of children with autism spectrum disorder (ASD) or related neurodevelopmental disorders (NDD). We assessed the utility of clinical chromosomal microarray analysis (CMA), defined by diagnostic yield and parental empowerment, in population‐based sample of parents of affected children; and explored child, family, and health services factors predictive of empowerment. Methods Participants were families of children undergoing diagnostic assessments, between 2016 and 2019. Diagnostic yield of CMA in affected children was determined. Parental empowerment was measured through adapted version of the Genetics Counseling Outcome Scale‐24. Parents completed questionnaires to capture child, family, and health service factors. Results The diagnostic yield of CMA was 2.8% for pathogenic variants. Parental empowerment was significantly correlated with family functioning and aspects of perceived family‐centeredness of care. The model accounted for 49.8% of the variation in parental empowerment, F (10,37) = 3.67, p = 0.002. After accounting for other predictors, parental perception of the provision of general information remained significantly associated with empowerment. Conclusion The informational needs of families play an important role in their empowerment during genetic testing. Meeting these needs and monitoring empowerment can aid genomic technologies integration in personalized healthcare for ASD/NDD.Iskra PeltekovaAfiqah YusufJennifer FreiTal Savion‐LemieuxRidha JooberJennifer HoweStephen W. SchererMayada ElsabbaghWileyarticleautism spectrum disorderempowermentgenetic testingneurodevelopmental disordersGeneticsQH426-470ENMolecular Genetics & Genomic Medicine, Vol 9, Iss 11, Pp n/a-n/a (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	autism spectrum disorder empowerment genetic testing neurodevelopmental disorders Genetics QH426-470
spellingShingle	autism spectrum disorder empowerment genetic testing neurodevelopmental disorders Genetics QH426-470 Iskra Peltekova Afiqah Yusuf Jennifer Frei Tal Savion‐Lemieux Ridha Joober Jennifer Howe Stephen W. Scherer Mayada Elsabbagh Predictors of empowerment in parents of children with autism and related neurodevelopmental disorders who are undergoing genetic testing
description	Abstract Background There is limited empirical data quantifying the utility of genetic testing for families of children with autism spectrum disorder (ASD) or related neurodevelopmental disorders (NDD). We assessed the utility of clinical chromosomal microarray analysis (CMA), defined by diagnostic yield and parental empowerment, in population‐based sample of parents of affected children; and explored child, family, and health services factors predictive of empowerment. Methods Participants were families of children undergoing diagnostic assessments, between 2016 and 2019. Diagnostic yield of CMA in affected children was determined. Parental empowerment was measured through adapted version of the Genetics Counseling Outcome Scale‐24. Parents completed questionnaires to capture child, family, and health service factors. Results The diagnostic yield of CMA was 2.8% for pathogenic variants. Parental empowerment was significantly correlated with family functioning and aspects of perceived family‐centeredness of care. The model accounted for 49.8% of the variation in parental empowerment, F (10,37) = 3.67, p = 0.002. After accounting for other predictors, parental perception of the provision of general information remained significantly associated with empowerment. Conclusion The informational needs of families play an important role in their empowerment during genetic testing. Meeting these needs and monitoring empowerment can aid genomic technologies integration in personalized healthcare for ASD/NDD.
format	article
author	Iskra Peltekova Afiqah Yusuf Jennifer Frei Tal Savion‐Lemieux Ridha Joober Jennifer Howe Stephen W. Scherer Mayada Elsabbagh
author_facet	Iskra Peltekova Afiqah Yusuf Jennifer Frei Tal Savion‐Lemieux Ridha Joober Jennifer Howe Stephen W. Scherer Mayada Elsabbagh
author_sort	Iskra Peltekova
title	Predictors of empowerment in parents of children with autism and related neurodevelopmental disorders who are undergoing genetic testing
title_short	Predictors of empowerment in parents of children with autism and related neurodevelopmental disorders who are undergoing genetic testing
title_full	Predictors of empowerment in parents of children with autism and related neurodevelopmental disorders who are undergoing genetic testing
title_fullStr	Predictors of empowerment in parents of children with autism and related neurodevelopmental disorders who are undergoing genetic testing
title_full_unstemmed	Predictors of empowerment in parents of children with autism and related neurodevelopmental disorders who are undergoing genetic testing
title_sort	predictors of empowerment in parents of children with autism and related neurodevelopmental disorders who are undergoing genetic testing
publisher	Wiley
publishDate	2021
url	https://doaj.org/article/930e915858d144da895c557e7b0b05c7
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Predictors of empowerment in parents of children with autism and related neurodevelopmental disorders who are undergoing genetic testing

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