Diagnostic and Therapeutic Misconception: Parental Expectations and Perspectives Regarding Genetic Testing for Developmental Disorders / Isabelle TREMBLAY in Journal of Autism and Developmental Disorders, 49-1 (January 2019)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 49-1 (January 2019) . - p.363-375 Titre : Diagnostic and Therapeutic Misconception: Parental Expectations and Perspectives Regarding Genetic Testing for Developmental Disorders Type de document : texte imprimé Auteurs : Isabelle TREMBLAY, Auteur ; Steffany GRONDIN, Auteur ; Anne-Marie LABERGE, Auteur ; Dominique COUSINEAU, Auteur ; Lionel CARMANT, Auteur ; Anita ROWAN, Auteur ; Annie JANVIER, Auteur Article en page(s) : p.363-375 Langues : Anglais (eng) Mots-clés : Array comparative genomic hybridization (aCGH)  Autism spectrum disorder  Chromosomal microarray (CMA) testing  Genetic testing  Global developmental delay  Misconception Index. décimale : PER Périodiques Résumé : Parents' understanding/expectations regarding genetic testing for children with developmental disorders were explored. Within a month of testing, interviews were conducted with 57 parents. Many (74%) could not recall the nature of testing. Parents expected genetic testing to have positive impacts for the child (93%) and the family (98%), mainly to find the etiology and/or an intervention. Many parents (40%) reported not knowing their child's clinical diagnosis. They expected genetic testing would establish the diagnosis. Parents anticipated potential negative impacts of testing for children (78%) and families (87%), mainly finding another illness or not finding potential interventions. Abnormal results explaining the disorder were found in 9% of children. In summary, genetic results for developmental disorders are unlikely to meet parental expectations. En ligne : http://dx.doi.org/10.1007/s10803-018-3768-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=377 [article] Diagnostic and Therapeutic Misconception: Parental Expectations and Perspectives Regarding Genetic Testing for Developmental Disorders [texte imprimé] / Isabelle TREMBLAY, Auteur ; Steffany GRONDIN, Auteur ; Anne-Marie LABERGE, Auteur ; Dominique COUSINEAU, Auteur ; Lionel CARMANT, Auteur ; Anita ROWAN, Auteur ; Annie JANVIER, Auteur . - p.363-375. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 49-1 (January 2019) . - p.363-375 Mots-clés : Array comparative genomic hybridization (aCGH)  Autism spectrum disorder  Chromosomal microarray (CMA) testing  Genetic testing  Global developmental delay  Misconception Index. décimale : PER Périodiques Résumé : Parents' understanding/expectations regarding genetic testing for children with developmental disorders were explored. Within a month of testing, interviews were conducted with 57 parents. Many (74%) could not recall the nature of testing. Parents expected genetic testing to have positive impacts for the child (93%) and the family (98%), mainly to find the etiology and/or an intervention. Many parents (40%) reported not knowing their child's clinical diagnosis. They expected genetic testing would establish the diagnosis. Parents anticipated potential negative impacts of testing for children (78%) and families (87%), mainly finding another illness or not finding potential interventions. Abnormal results explaining the disorder were found in 9% of children. In summary, genetic results for developmental disorders are unlikely to meet parental expectations. En ligne : http://dx.doi.org/10.1007/s10803-018-3768-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=377

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