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

TitlePredictors of empowerment in parents of children with autism and related neurodevelopmental disorders who are undergoing genetic testing.
Publication TypeJournal Article
Year of Publication2021
AuthorsPeltekova I, Yusuf A, Frei J, Savion-Lemieux T, Joober R, Howe J, Scherer SW, Elsabbagh M
JournalMol Genet Genomic Med
Volume9
Issue11
Paginatione1803
Date Published2021 Nov
ISSN2324-9269
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.

DOI10.1002/mgg3.1803
Alternate JournalMol Genet Genomic Med
PubMed ID34668664
PubMed Central IDPMC8606197
Grant List / / Fonds de Recherche du Québec - Santé /
/ / Canadian Institute of Health Research /
/ / Genome Canada /