Abstract
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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Acknowledgments
This study was conducted as part of the requirements for MD degree from the Goldman Medical School at the Faculty of Health Sciences, Ben-Gurion University of the Negev. We thank Yotam Lior for helping in statistical guidance, Rotem Saban for helping with data retrieval, and Inez Mureinik for critical reviewing and editing of the manuscript. Special thanks are for the families who participated in the study.
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All authors contributed to the study conception and design. Material preparation and data collection were performed by Yonah Hendel, and Gal Meiri. Data analysis was performed by Yonah Hendel and Idan Menashe. The first draft of the manuscript was written by Yonah Hendel, Gal Meiri and Idan Menashe and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
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Hendel, Y., Meiri, G., Flusser, H. et al. Factors Affecting Family Compliance with Genetic Testing of Children Diagnosed with Autism Spectrum Disorder. J Autism Dev Disord 51, 1201–1209 (2021). https://doi.org/10.1007/s10803-020-04589-y
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DOI: https://doi.org/10.1007/s10803-020-04589-y