4.5 Article

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

Journal

JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS
Volume 51, Issue 4, Pages 1201-1209

Publisher

SPRINGER/PLENUM PUBLISHERS
DOI: 10.1007/s10803-020-04589-y

Keywords

Autism spectrum disorder; Genetic testing; Compliance

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Research indicates that despite government funding for post-diagnostic genetic testing for children with ASD in Israel, only a third of families completed the testing. Doctor's recommendation was the main factor influencing compliance, with over 50% of non-compliant families considering genetic testing irrelevant. This highlights the importance of clear recommendations and explanations to emphasize the benefits and relevance of genetic testing for children with ASD.
There is broad consensus about the importance of post-diagnostic genetic testing for children with ASD. However, the extent of compliance with these tests and the factors affecting compliance have rarely been examined. We surveyed a sample of 114 families with a child with ASD in Israel, where such genetic testing is funded by the government. We found that only one-third of these families completed post-diagnosis genetic testing for their child. The main factor influencing compliance was the doctor ' s recommendation (OR 11.6; 95% CI 3.2-42.4; p < 0.001). Furthermore, > 50% of the non-compliant families reported that genetic testing was irrelevant to them. Our findings highlight the importance of providing clear recommendations and explanations regarding the benefits and relevance of post-diagnosis genetic testing for children with ASD.

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