Journal of Autism and Developmental Disorders

, Volume 48, Issue 10, pp 3542–3550 | Cite as

Emergency Department Use: Common Presenting Issues and Continuity of Care for Individuals With and Without Intellectual and Developmental Disabilities

  • Anna DurbinEmail author
  • Robert Balogh
  • Elizabeth Lin
  • Andrew S. Wilton
  • Yona Lunsky
Original Paper


This population-based cohort study examined the relationship between level of continuity of primary care and subsequent emergency department (ED) visits for adults with (n = 66,484) and without intellectual and developmental disabilities (IDD)(n = 2,760,670). Individuals with IDD were more likely than individuals with no IDD to visit the ED (33.96% versus 20.28%, p < 0.0001). For both groups receiving greater continuity of primary care was associated with less ED use, but this relationship was more marked for adults with IDD. While continuity of primary care can reduce ED use for populations with and without IDD, it is a higher priority for individuals with IDD whose cognitive and adaptive impairments may complicate help-seeking, diagnosis, and treatment. Improving primary care can have far-reaching implications for this complex population.


Continuity of care Developmental disabilities Emergency department Intellectual disabilities Primary care Primary care physicians 



This paper is part of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program. This paper was supported by a Partnerships in Health Systems Improvement grant (PHE #103973) from the Canadian Institutes of Health Research (CIHR) using data provided by the Ontario Ministry of Health and Long-Term Care (MOHLTC), and the Ontario Ministry of Community and Social Services (MCSS), to the Institute for Clinical Evaluative Sciences (ICES). The opinions, results and conclusions reported in this paper are those of the authors and do not necessarily represent the funding sources and data providers. No endorsement by the CIHR, MOHLTC, MCSS or ICES is intended or should be inferred. Parts of this material are based on data and information compiled and provided by the Canadian Institute for Health Information (CIHI). However, the analyses, conclusions, opinions and statements expressed herein are those of the author, and not necessarily those of CIHI. The Johns Hopkins ACG® system Version 10 was used for the research.

Author Contribuions

AD wrote the first draft of the manuscript. ASW conducted the analysis. RB, EL and YL assisted with all parts of the manuscript preparation, including reviewing the final manuscript draft.

Compliance with Ethical Standards

Conflict of interest

All authors declare that they have no conflicts of interest.

Ethical Approval

This article does not contain any studies with human participants or animals performed by any of the authors.


  1. Aseltine, R. H., Sabina, A. Jr, Barclay, G., & Graham, G. (2016). Variation in patient-provider communication by patient’s race and ethnicity, provider type, and continuity in and site of care: An analysis of data from the connecticut health care survey. SAGE Open Medicine, 4, 2050312115625162.CrossRefGoogle Scholar
  2. Bentler, S. E., Morgan, R. O., Virnig, B. A., & Wolinsky, F. D. (2014). The association of longitudinal and interpersonal continuity of care with emergency department use, hospitalization, and mortality among Medicare beneficiaries. PloS One, 9(12), e115088.CrossRefGoogle Scholar
  3. Berenson, R. A., Hammons, T., Gans, D. N., Zuckerman, S., Merrell, K., Underwood, W. S., et al. (2008). A house is not a home: Keeping patients at the center of practice redesign. Health Affairs (Project Hope), 27(5), 1219–1230.CrossRefGoogle Scholar
  4. Cooper, S. A., Smiley, E., Morrison, J., Williamson, A., & Allan, L. (2007). Mental ill-health in adults with intellectual disabilities: prevalence and associated factors. The British Journal of Psychiatry, 190, 27–35. Scholar
  5. du Plessis, V., Beshiri, R., Bollman, R. D., & Clemenson, H. Definitions of rural. rural and small town Canada analysis bulletin 2001;3(3). Statistics Canada catalogue no. 21-006-XI.Google Scholar
  6. Gill, J. M., Mainous, A., & Nsereko, M. (2000). G.,3rd. The effect of continuity of care on emergency department use. Archives of Family Medicine, 9(4), 333–338.CrossRefGoogle Scholar
  7. Glazier, R. H., & Redelmeier, D. A. (2010). Building the patient-centered medical home in Ontario. JAMA: The Journal of the American Medical Association, 303(21), 2186–2187.CrossRefGoogle Scholar
  8. Gupta, R., & Bodenheimer, T. (2013). How primary care practices can improve continuity of care. JAMA Internal Medicine, 173(20), 1885–1886.CrossRefGoogle Scholar
  9. Haggerty, J. L., Reid, R. J., Freeman, G. K., Starfield, B. H., Adair, C. E., & McKendry, R. (2003). Continuity of care: A multidisciplinary review. BMJ, 327(7425), 1219–1221.CrossRefGoogle Scholar
  10. Iannuzzi, D. A., Cheng, E. R., Broder-Fingert, S., & Bauman, M. L. (2015). Brief report: Emergency department utilization by individuals with autism. Journal of Autism and Developmental Disorders, 45(4), 1096–1102.CrossRefGoogle Scholar
  11. Ionescu-Ittu, R., McCusker, J., Ciampi, A., Vadeboncoeur, A. M., Roberge, D., Larouche, D., et al. (2007). Continuity of primary care and emergency department utilization among elderly people. Canadian Medical Association Journal, 177(11), 1362–1368.CrossRefGoogle Scholar
  12. John Hopkins adjusted clinical groups case-mix system. (ND). Retrieved from 21 July, 2017,
  13. Knol, M. J., Egger, M., Scott, P., Geerlings, M. I., & Vandenbroucke, J. P. (2009). When one depends on the other: Reporting of interaction in case-control and cohort studies.. Epidemiology, 20(2), 161–166.CrossRefGoogle Scholar
  14. Lin, E., Balogh, R., Cobigo, V., Ouellette-Kuntz, H., Wilton, A. S., & Lunsky, Y. (2013). Using administrative health data to identify individuals with intellectual and developmental disabilities: A comparison of algorithms. Journal of Intellectual Disability Research, 57(5), 462–477.CrossRefGoogle Scholar
  15. Lin, E., Balogh, R., Isaacs, B., Ouellette-Kuntz, H., Selick, A., Wilton, A. S., et al. (2014). Strengths and limitations of health and disability support administrative databases for population-based health research in intellectual and developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 11(4), 235 – 44.CrossRefGoogle Scholar
  16. Liu, G., Pearl, A. M., Kong, L., Leslie, D. L., & Murray, M. J. (2017). A profile on emergency department utilization in adolescents and young adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 47(2), 347–358.CrossRefGoogle Scholar
  17. Lunsky, Y., Balogh, R., & Cairney, J. (2012). Predictors of emergency department visits by persons with intellectual disability experiencing a psychiatric crisis. Psychiatric Services (Washington, D.C.), 63(3), 287–290.CrossRefGoogle Scholar
  18. Lunsky, Y., & Gracey, C. (2009). The reported experience of four women with intellectual disabilities receiving emergency psychiatric services in Canada: A qualitative study. Journal of Intellectual Disabilities, 13(2), 87–98.CrossRefGoogle Scholar
  19. Lunsky, Y., Gracey, C., & Gelfand, S. (2008). Emergency psychiatric services for individuals with intellectual disabilities: Perspectives of hospital staff. Intellectual and Developmental Disabilities, 46(6), 446–455.CrossRefGoogle Scholar
  20. Lunsky, Y., Klein-Geltink, J. E., et al. (2013). Atlas on the primary care of adults with developmental disabilities in Ontario. Toronto, ON: Institute for Clinical Evaluative Sciences and Centre for Addiction and Mental Health. Retrieved October 18, 2017, from
  21. Lunsky, Y., Lin, E., Balogh, R., Klein-Geltink, J., Wilton, A. S., & Kurdyak, P. (2012). Emergency department visits and use of outpatient physician services by adults with developmental disability and psychiatric disorder. Canadian Journal of Psychiatry, 57(10), 601–607.CrossRefGoogle Scholar
  22. Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Boisclair, W. C., Ashkenazy, E., & Baggs, A. (2013). Comparison of healthcare experiences in autistic and non-autistic adults: A cross-sectional online survey facilitated by an academic-community partnership. Journal of General Internal Medicine., 28(6), 761–769. Scholar
  23. Pines, J. M., Hilton, J. A., Weber, E. J., Alkemade, A. J., Shabanah, A. H, Anderson, P. D., et al (2011). International perspectives on emergency department crowding. Academic Emergency Medicine: Official Journal of the Society for Academic Emergency Medicine, 18(12), 1358–1370.CrossRefGoogle Scholar
  24. Schaink, A., Kuluksi, K., Lyons, R., Fortin, M., Jaded, A. R., Upshur, R., et al. (2012). A scoping review and thematic classification of patient complexity: Offering a unifying framework. Journal of Comorbidity, 2(1), 1–9.CrossRefGoogle Scholar
  25. Schillinger, D., Piette, J., Grumbach, K., Wang, F., Wilson, C., Daher, C., et al. (2003). Closing the loop: Physician communication with diabetic patients who have low health literacy. Archives of Internal Medicine, 163(1), 83–90.CrossRefGoogle Scholar
  26. SEEI Coordinating Centre. (2009). Moving in the right direction: SEEI final report. health systems research and consulting unit. Centre for Addiction and Mental Health. Retrieved August 5, 2017, from
  27. Starfield, B., Shi, L., & Macinko, J. (2005). Contribution of primary care to health systems and health. The Milbank Quarterly, 83(3), 457–502.CrossRefGoogle Scholar
  28. Steele, L. S., Durbin, A., Lin, E., Victor, J. C., Klein-Geltink, J., Glazier, R. H., et al (2014). Primary care reform and service use by people with serious mental illness in Ontario. Healthcare Policy, 10(1), 31–45.PubMedPubMedCentralGoogle Scholar
  29. Sullivan, W. F., Diepstra, H., Heng, J., et al. (2018). Primary care of adults with intellectual and developmental disabilities. 2018 Canadian consensus guidelines. Canadian Family Physician, 64(4) 254–279;
  30. Vohra, R., Madhavan, S., & Sambamoorthi, U. (2016). Emergency department use among adults with autism spectrum disorders (ASD). Journal of Autism and Developmental Disorders, 46(4), 1441–1454.CrossRefGoogle Scholar
  31. Weiss, J. A., Lunsky, Y., Gracey, C., Canrinus, M., & Morris, S. (2009). Emergency psychiatric services for individuals with intellectual disabilities: Caregivers’ perspectives. Journal of Applied Research in Intellectual Disabilities, 22(4), 354–362.CrossRefGoogle Scholar
  32. Wood, D., Hall, A., Hou, T., Wludyka, P., & Zhang, J. (2007). Continuity of care to prevent emergency room use among persons with intellectual and developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4(4), 219–228.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  • Anna Durbin
    • 1
    • 4
    • 6
    Email author
  • Robert Balogh
    • 2
    • 4
  • Elizabeth Lin
    • 3
    • 4
    • 6
  • Andrew S. Wilton
    • 4
  • Yona Lunsky
    • 4
    • 5
    • 6
  1. 1.Centre for Urban Health SolutionsLi Ka Shing Knowledge Institute, St. Michael’s HospitalTorontoCanada
  2. 2.Faculty of Health SciencesUniversity of Ontario Institute of TechnologyOshawaCanada
  3. 3.Provincial System Support ProgramCentre for Addiction and Mental HealthTorontoCanada
  4. 4.Institute for Clinical Evaluative SciencesTorontoCanada
  5. 5.Adult Neurodevelopmental ServicesCentre for Addiction and Mental HealthTorontoCanada
  6. 6.Department of PsychiatryUniversity of TorontoTorontoCanada

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