Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Feb;14(2):400-410.
doi: 10.1002/aur.2419. Epub 2020 Oct 24.

Identifying Children and Youth With Autism Spectrum Disorder in Electronic Medical Records: Examining Health System Utilization and Comorbidities

Jennifer D Brooks  1 , Susan E Bronskill  1   2 , Longdi Fu  2 , Farah E Saxena  2 , Jasleen Arneja  1 , Virgiliu Bogdan Pinzaru  2 , Evdokia Anagnostou  3   4 , Kirk Nylen  5   6 , John McLaughlin  1 , Karen Tu  1   7   8   9
Affiliations

Identifying Children and Youth With Autism Spectrum Disorder in Electronic Medical Records: Examining Health System Utilization and Comorbidities

Jennifer D Brooks et al. Autism Res. 2021 Feb.

Abstract

Autism spectrum disorder (ASD) is a neurodevelopmental disorder requiring significant health and educational resources for affected individuals. A reference standard for ASD was generated from an existing population-based cohort of 10,000 children and youth aged 1-24 years who were randomly selected for chart abstraction from 29,256 patients from 119 family physicians. We developed and validated an algorithm to identify children and youth with ASD within an electronic medical record system (N = 80,237, aged 1-24 years) in order to examine the prevalence of comorbidities and quantify health system utilization within the cohort. We identified 1,062 children and youth with ASD representing a prevalence of 1.32%. Compared to individuals without ASD, those with ASD had a higher prevalence of asthma, were more likely to visit a specialist, undergo surgery, and be hospitalized for psychiatric reasons. Children and youth with ASD in Ontario have complex health system needs, illustrated through a significant burden of comorbidities and increased health system utilization. LAY SUMMARY: Our paper generates population-based estimates of health system use by children and youth with ASD, who have a higher burden of comorbidities than the general population. We developed a case-finding algorithm and applied it in electronic medical records to create a cohort of children and youth with ASD, thereby generating an important resource to further study the health care needs of individuals with ASD.

Keywords: ASD; algorithm; autism; comorbidity; electronic medical record; health system use.

PubMed Disclaimer

Figures

Figure 1
Figure 1
Flow diagram for the development of the reference standard and selection of the study population from the Electronic Medical Record Primary Care (EMRPC) database. Physicians who have been using PS Suite® (formerly Practice Solutions) electronic medical records (EMR) for at least 2 years are eligible to participate in EMRPC.
See this image and copyright information in PMC

References

    1. Baio, J. , Wiggins, L. , Christensen, D. L. , Maenner, M. J. , Daniels, J. , Warren, Z. , … White, T. (2018). Prevalence of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MMWR Surveillance Summaries, 67(6), 1–23. - PMC - PubMed
    1. Brondino, N. , Fusar‐Poli, L. , Miceli, E. , Di Stefano, M. , Damiani, S. , Rocchetti, M. , & Politi, P. (2019). Prevalence of medical comorbidities in adults with autism spectrum disorder. Journal of General Internal Medicine, 34(10), 1992–1994. 10.1007/s11606-019-05071-x - DOI - PMC - PubMed
    1. Bush, R. A. , Connelly, C. D. , Perez, A. , Barlow, H. , & Chiang, G. J. (2017). Extracting autism spectrum disorder data from the electronic health record. Applied Clinical Informatics, 8(3), 731–741. 10.4338/aci-2017-02-ra-0029 - DOI - PMC - PubMed
    1. Cashin, A. , Buckley, T. , Trollor, J. N. , & Lennox, N. (2018). A scoping review of what is known of the physical health of adults with autism spectrum disorder. Journal of Intellectual Disabilities, 22(1), 96–108. 10.1177/1744629516665242 - DOI - PubMed
    1. Cawthorpe, D. (2017). Comprehensive description of comorbidity for autism spectrum disorder in a general population. The Permanente Journal, 21, 86–90. 10.7812/tpp/16-088 - DOI - PMC - PubMed

Publication types