Journal article
Medicaid claims from 2008 to 2016 indicate low rates of genetic testing among children with intellectual disability and autism spectrum disorder
Genetics in medicine, v 27(8), 101451
01 Aug 2025
PMID: 40531066
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
Little is known nationally about the clinical implementation of existing genetic testing medical guidelines for children with autism spectrum disorder (ASD) and/or intellectual disability (ID) among those enrolled in Medicaid or Children’s Health Insurance Program plans.
Children with diagnosis codes for ASD-only, ID-only, and ASD + ID were identified using established algorithms with 2008 to 2016 Medicaid claims data. The outcome measure is the cumulative proportion of individuals with genetic testing procedure codes.
The cohort consisted of 241,060 children aged 7 to 17 years. The frequency of genetic testing was low across diagnoses, with ASD + ID showing the highest frequency of 25.94%. The ASD + ID cohort had the highest odds of genetic testing (aOR = 29.43 [95% CI 27.57-31.41]) compared with a random sample of children without ASD or ID. Cytogenetics and Fragile X testing were the predominant testing types used up to 2013, followed by increasing use of chromosomal microarray analysis and gene panels in 2014 to 2016.
The results suggest that the clinical implementation of genetic testing in children with neurodevelopmental disabilities in the Medicaid-enrolled population was low in frequency compared with the eligible population with neurodevelopmental disorders. Further research could identify facilitators and barriers to the clinical use of genetic testing in this population.
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Details
- Title
- Medicaid claims from 2008 to 2016 indicate low rates of genetic testing among children with intellectual disability and autism spectrum disorder
- Creators
- Tashalee R. Brown - University of California, Los AngelesWei-Lin Lee - Drexel University, A.J. Drexel Autism InstituteJonas Ventimiglia - Drexel University, A.J. Drexel Autism InstituteAudrey Thurm - National Institute of Mental HealthTess Levy - Icahn School of Medicine at Mount SinaiVictoria Yuan - Neurobehavioral SystemsJulian A. Martinez-Agosto - University of California, Los AngelesLindsay L. Shea - Drexel University, Health Management and Policy
- Publication Details
- Genetics in medicine, v 27(8), 101451
- Publisher
- Elsevier Inc
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- A.J. Drexel Autism Institute; Health Management and Policy
- Web of Science ID
- WOS:001544938100001
- Scopus ID
- 2-s2.0-105008553511
- Other Identifier
- 991022059821304721
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- Collaboration types
- Domestic collaboration
- Web of Science research areas
- Genetics & Heredity