Children with genetic conditions in the United States: Prevalence estimates from the 2016-2017 National Survey of Children 's Health

Purpose: Estimating the overall prevalence of genetic conditions among children in the United States and the burden of these conditions on children and their families has been challenging. The redesigned National Survey of Children's Health provides an opportunity to examine the prevalence and burden. Methods: We used the combined 2016-2017 National Survey of Children's Health to estimate the prevalence of genetic conditions among children aged 0 to 17 years (N = 71,522). Bivariate analyses were used to assess differences in sociodemographic characteristics, health-related characteristics, and health care utilization between children with and without genetic conditions. Results: In 2016-2017, the prevalence of children aged 0 to 17 years with a reported genetic condition was approximately 0.039, roughly equating to 2.8 million children. A greater percentage of children with genetic conditions had a physical (50.9% vs 24.8%), mental (27.9% vs 5.8%), or behavioral/ developmental/intellectual condition (55.6% vs 14.4%) than children without a genetic condition. Furthermore, they used more care and had more unmet health needs (7.6% vs 2.9%). Conclusion: This study provides an estimate of the overall prevalence of children living with genetic conditions in the United States based on a nationally representative sample. It also highlights the physical, mental, and behavioral health needs among children with genetic conditions and their unmet health care needs. Published by Elsevier Inc. on behalf of American College of Medical Genetics and Genomics.