Parents’ Perceptions of the Usefulness of Chromosomal Microarray Analysis for Children with Autism Spectrum Disorders / Marian REIFF in Journal of Autism and Developmental Disorders, 45-10 (October 2015)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 45-10 (October 2015) . - p.3262-3275 Titre : Parents’ Perceptions of the Usefulness of Chromosomal Microarray Analysis for Children with Autism Spectrum Disorders Type de document : Texte imprimé et/ou numérique Auteurs : Marian REIFF, Auteur ; Ellen GIARELLI, Auteur ; Barbara A. BERNHARDT, Auteur ; Ebony EASLEY, Auteur ; Nancy B. SPINNER, Auteur ; Pamela L. SANKAR, Auteur ; Surabhi MULCHANDANI, Auteur Article en page(s) : p.3262-3275 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders  Chromosomal microarray analysis  Genomic testing  Qualitative  Perceived utility  Parent perspectives Index. décimale : PER Périodiques Résumé : Clinical guidelines recommend chromosomal microarray analysis (CMA) for all children with autism spectrum disorders (ASDs). We explored the test’s perceived usefulness among parents of children with ASD who had undergone CMA, and received a result categorized as pathogenic, variant of uncertain significance, or negative. Fifty-seven parents participated in a semi-structured telephone interview, and 50 also completed a survey. Most parents reported that CMA was helpful for their child and family. Major themes regarding perceived usefulness were: medical care, educational and behavioral interventions, causal explanation, information for family members, and advancing knowledge. Limits to utility, uncertainties and negative outcomes were also identified. Our findings highlight the importance of considering both health and non-health related utility in genomic testing. En ligne : http://dx.doi.org/10.1007/s10803-015-2489-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=267 [article] Parents’ Perceptions of the Usefulness of Chromosomal Microarray Analysis for Children with Autism Spectrum Disorders [Texte imprimé et/ou numérique] / Marian REIFF, Auteur ; Ellen GIARELLI, Auteur ; Barbara A. BERNHARDT, Auteur ; Ebony EASLEY, Auteur ; Nancy B. SPINNER, Auteur ; Pamela L. SANKAR, Auteur ; Surabhi MULCHANDANI, Auteur . - p.3262-3275. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 45-10 (October 2015) . - p.3262-3275 Mots-clés : Autism spectrum disorders  Chromosomal microarray analysis  Genomic testing  Qualitative  Perceived utility  Parent perspectives Index. décimale : PER Périodiques Résumé : Clinical guidelines recommend chromosomal microarray analysis (CMA) for all children with autism spectrum disorders (ASDs). We explored the test’s perceived usefulness among parents of children with ASD who had undergone CMA, and received a result categorized as pathogenic, variant of uncertain significance, or negative. Fifty-seven parents participated in a semi-structured telephone interview, and 50 also completed a survey. Most parents reported that CMA was helpful for their child and family. Major themes regarding perceived usefulness were: medical care, educational and behavioral interventions, causal explanation, information for family members, and advancing knowledge. Limits to utility, uncertainties and negative outcomes were also identified. Our findings highlight the importance of considering both health and non-health related utility in genomic testing. En ligne : http://dx.doi.org/10.1007/s10803-015-2489-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=267

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