Abstract
The prevalence of Autism Spectrum Disorder (ASD) is growing rapidly, affecting 1 in 59 children in the United States in 2018. Individuals with ASD currently receive fragmented care that threatens their health and well-being. Challenges of autism care include disconnections between the medical system and school supports, poor care coordination between primary care and specialists, and saturation of neuropsychiatry-based centers’ capacity to care for the ASD population. ASD treatment also lacks of a coordinated system of care for patients’ multi-system comorbidities. Families are calling for an ASD care delivery system to meet their needs and the needs of their children. To serve people with ASD and their medical and other providers, we propose a coordinated approach to care grounded in primary care. We call the model the “Systematic Network of Autism Primary Care Services (SYNAPSE).” We develop the model by applying the frameworks of “coproduction” of care and chronic disease management. In this Commentary we discuss the model’s rationale, underpinnings, and the implications for clinical practice. We advance these ideas to align with policy makers’ recognition of the importance of primary care for ASD, as reflected by the most recent Interagency Autism Coordinating Committee (IACC) meeting at the National Institute of Mental Health.
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References
American Academy of Child and Adolescent Psychiatry. (2016). American Academy of Child and Adolescent Psychiatry Workforce Issue. Retrieved April 11, 2018, from https://www.aacap.org/aacap/resources_for_primary_care/Workforce_Issues.aspx.
Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., et al. (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. https://doi.org/10.15585/mmwr.ss6706a1.
Batalden, M., Batalden, P., Margolis, P., Seid, M., Armstrong, G., Opipari-Arrigan, L., & Hartung, H. (2016). Coproduction of healthcare service. BMJ Quality & Safety, 25(7), 509–517. https://doi.org/10.1136/bmjqs-2015-004315.
Bosnic-Anticevich, S. Z. (2016). Asthma management in primary care: caring, sharing and working together. European Respiratory Journal, 47, 1043–1046. https://doi.org/10.1183/13993003.00240-2016.
Brachlow, A. E., Ness, K. K., McPheeters, M. L., & Gurney, J. G. (2007). Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National Survey of Children’s Health. Archives of Pediatrics & Adolescent Medicine, 161(4), 399–405. https://doi.org/10.1001/archpedi.161.4.399.
Brookman-Frazee, L., Baker-Ericzén, M., Stadnick, N., & Taylor, R. (2012). Parent perspectives on community mental health services for children with autism spectrum disorders. Journal of Child and Family Studies, 21(4), 533–544. https://doi.org/10.1007/s10826-011-9506-8.
Bruder, M. B., Kerins, G., Mazzarella, C., Sims, J., & Stein, N. (2012). Brief report: The medical care of adults with autism spectrum disorders: Identifying the needs. Journal of Autism and Developmental Disorders, 42(11), 2498–2504. https://doi.org/10.1007/s10803-012-1496-x.
Buescher, A. V. S., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatrics, 168(8), 721–728. https://doi.org/10.1001/jamapediatrics.2014.210.
Chandrasekhar, T., & Sikich, L. (2015). Challenges in the diagnosis and treatment of depression in autism spectrum disorders across the lifespan. Dialogues in Clinical Neuroscience, 17(2), 1–9.
Cheak-Zamora, N. C., Farmer, J. E., Mayfield, W. A., Clark, M. J., Marvin, A. R., Law, J. K., & Law, P. A. (2014). Health care transition services for youth with autism spectrum disorders. Rehabilitation Psychology, 59(3), 340–348. https://doi.org/10.1037/a0036725.
Coordination, O. O. A. R. (2018a). Workshop materials list co-occurring conditions (General), (pp. 1–13). https://doi.org/10.1007/s10803.
Coordination, O. O. A. R. (2018b). Oral public comments for the 2018 IACC Health Workshop (pp. 1–12).
Crandall, W., Kappelman, M. D., Colletti, R. B., Leibowitz, I., Grunow, J. E., Ali, S., et al. (2011). ImproveCareNow: The development of a pediatric inflammatory bowel disease improvement network. Inflammatory Bowel Diseases, 17(1), 450–457. https://doi.org/10.1002/ibd.21394.
Fueyo, M., Caldwell, T., Mattern, S. B., Zahid, J., & Foley, T. (2015). The health home: A service delivery model for autism and intellectual disability. Psychiatric Services (Washington, D.C.), 66(11), 1135–1137. https://doi.org/10.1176/appi.ps.201400443.
Gee, A. L., & Gee, A. (2018, March 22). Filling the gap in pediatric neurology. Retrieved December 16, 2018, from http://practicalneurology.com/pdfs/PN0318_CF7.pdf.
Golnik, A., Ireland, M., & Borowsky, I. W. (2009). medical homes for children with autism: A physician survey. Pediatrics, 123(3), 966–971. https://doi.org/10.1542/peds.2008-1321.
Gordon-Lipkin, E., Foster, J., & Peacock, G. (2016). Whittling down the wait time. Pediatric Clinics of North America, 63(5), 851–859. https://doi.org/10.1016/j.pcl.2016.06.007.
Hatfield, M., Falkmer, M., Falkmer, T., & Ciccarelli, M. (2016). Evaluation of the effectiveness of an online transition planning program for adolescents on the autism spectrum: trial protocol. Child and Adolescent Psychiatry and Mental Health. https://doi.org/10.1186/s13034-016-0137-0.
Hirth, V., Baskins, J., & Dever-Bumba, M. (2009). Program of all-inclusive care (PACE): Past, present, and future. Journal of the American Medical Directors Association, 10(3), 155–160. https://doi.org/10.1016/j.jamda.2008.12.002.
Hoefman, R., Payakachat, N., van Exel, J., Kuhlthau, K., Kovacs, E., Pyne, J., & Tilford, J. M. (2014). Caring for a child with autism spectrum disorder and parents’ quality of life: Application of the CarerQol. Journal of Autism and Developmental Disorders, 44(8), 1933–1945.
IACC, & Coordination, N. O. O. A. R. (2018). 2016–2017 IACC strategic plan for autism spectrum disorder (pp. 1–196).
Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247–277. https://doi.org/10.1007/s10567-012-0119-6.
Kohane, I. S., McMurry, A., Weber, G., MacFadden, D., Rappaport, L., Kunkel, L., et al. (2012). The co-morbidity burden of children and young adults with autism spectrum disorders. PLoS ONE, 7(4), e33224–e33227. https://doi.org/10.1371/journal.pone.0033224.
Kong, X. (2018) Autism spectrum disorders co-morbidities and treatment approaches. Pediatric Dimensions, 3(3). https://doi.org/10.15761/PD.1000173.
Kuhlthau, K. A., Warfield, M. E., Hurson, J., Delahaye, J., & Crossman, M. K. (2015). Pediatric provider’s perspectives on the transition to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions. Autism, 19(3), 262–271. https://doi.org/10.1177/1362361313518125.
Kurtz, A. (2018, April 27). Accessing Healthcare: The experience of individuals with autism spectrum disorders in maine. Retrieved May 6, 2018, from https://digitalcommons.library.umaine.edu/cgi/viewcontent.cgi?article=1000&context=ccids_health.
Liaw, W. R., Jetty, A., Petterson, S. M., Peterson, L. E., & Bazemore, A. W. (2016). Solo and small practices: A vital, diverse part of primary care. The Annals of Family Medicine, 14(1), 8–15. https://doi.org/10.1370/afm.1839.
Liu, J., Amat, M., Song, R., & Kong, X. (2018). Early diagnosis and adulthood transition in autism spectrum disorders (ASD): How primary care helps to close the gaps. Pediatric Dimensions, 3(3), 1–5. https://doi.org/10.15761/PD.1000174.
Mazurek, M. O. (2018). ECHO Autism STAT: Accelerating early access to autism diagnosis. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-018-3696-5.
Mazurek, M. O., Brown, R., Curran, A., & Sohl, K. (2017). ECHO autism. Clinical Pediatrics, 56(3), 247–256. https://doi.org/10.1177/0009922816648288.
Mogayzel, P. J., Dunitz, J., Marrow, L. C., & Hazle, L. A. (2014). Improving chronic care delivery and outcomes: The impact of the cystic fibrosis Care Center Network. BMJ Quality & Safety, 23(Suppl 1), i3–i8. https://doi.org/10.1136/bmjqs-2013-002363.
Murphy, C., Wilson, C. E., Robertson, D. M., Ecker, C., Daly, E. M., Hammond, N., et al. (2016). Autism spectrum disorder in adults: Diagnosis, management, and health services development. Neuropsychiatric Disease and Treatment, 12, 1669–1686. https://doi.org/10.2147/NDT.S65455.
Muskens, J. B., Velders, F. P., & Staal, W. G. (2017). Medical comorbidities in children and adolescents with autism spectrum disorders and attention deficit hyperactivity disorders: A systematic review. European Child & Adolescent Psychiatry. https://doi.org/10.1007/s00787-017-1020-0.
Nicolaidis, C., Kripke, C. C., & Raymaker, D. (2014). Primary care for adults on the autism spectrum. Medical Clinics of North America, 98(5), 1169–1191. https://doi.org/10.1016/j.mcna.2014.06.011.
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. https://doi.org/10.1007/s11606-012-2262-7.
Nicolaidis, C., Raymaker, D., McDonald, K., Kapp, S., Weiner, M., Ashkenazy, E., et al. (2016). The development and evaluation of an online healthcare toolkit for autistic adults and their primary care providers. Journal of General Internal Medicine. https://doi.org/10.1007/s11606-016-3763-6.
Raymaker, D. M., McDonald, K. E., Ashkenazy, E., Gerrity, M., Baggs, A. M., Kripke, C., et al. (2016). Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism, 21(8), 972–984. https://doi.org/10.1177/1362361316661261.
Russell, S., & McCloskey, C. R. (2016). Parent perceptions of care received by children with an autism spectrum disorder. Journal of Pediatric Nursing, 31(1), 21–31. https://doi.org/10.1016/j.pedn.2015.11.002.
Sarris, M. (2014, June 19). Leaving the pediatrician: charting the medical transition of youth with autism. Retrieved January 2, 2018, from https://iancommunity.org/ssc/medical-transition-youth-autism.
Simon, A. E., & Akinbami, L. J. (2016). Asthma action plan receipt among children with asthma 2–17 years of age, United States, 2002–2013. The Journal of Pediatrics, 171, 283–289.e1. https://doi.org/10.1016/j.jpeds.2016.01.004.
Snow, L. M., Gans, A., Sedillo, M., Zurlo, D., & Buffaloe, J. (2016). June 2016 New Mexico Hepatitis C Coalition (pp. 1–40).
Soares, N., Baum, R., & Patel, D. (2017). Developmental-behavioral pediatrics education in the United States: Challenges in the midst of healthcare evolution. International Journal of Medical Education, 8, 396–399.
Vasa, R. A., & Mazurek, M. O. (2015). An update on anxiety in youth with autism spectrum disorders. Current Opinion in Psychiatry. https://doi.org/10.1097/YCO.0000000000000133.
Volkmar, F. R., Jackson, S. L. J., & Hart, L. (2017). Transition issues and challenges for youth with autism spectrum disorders. Pediatric Annals, 46(6), e219–e223. https://doi.org/10.3928/19382359-20170519-03.
Waisman Center, University of Wisconsin-Madison. (2008). Medical home services for autism spectrum disorders, (pp. 1–48). Madison: Waisman Center, University of Wisconsin-Madison
Warfield, M. E., Chiri, G., Leutz, W. N., & Timberlake, M. (2014). Family well-being in a participant-directed autism waiver program: The role of relational coordination. Journal of Intellectual Disability Research: JIDR, 58(12), 1091–1104. https://doi.org/10.1111/jir.12102.
Williams, P. G., Tomchek, S., Grau, R., Bundy, M. B., Davis, D. W., & Kleinert, H. (2012). Parent and physician perceptions of medical home care for children with autism spectrum disorders in the state of Kentucky. Clinical Pediatrics, 51(11), 1071–1078. https://doi.org/10.1177/0009922812460333.
World Health Organization. (2004, August 12). General Principles of Good Chronic Care. Retrieved December 10, 2018, from https://www.who.int/hiv/pub/imai/generalprinciples082004.pdf.
Yerramsetti, A. P. (2017). The other patients: Caregiver and clinician stress in treating autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 56(10), S45. https://doi.org/10.1016/j.jaac.2017.07.176.
Zablotsky, B., Kalb, L. G., Freedman, B., Vasa, R., & Stuart, E. A. (2014). Health care experiences and perceived financial impact among families of children with an autism spectrum disorder. Psychiatric Services, 65(3), 395–398. https://doi.org/10.1176/appi.ps.201200552.
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We thank Dr. Clarrisa Kripke for her comments. This work received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
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XK conceived the concept and protocol. XK and JL jointly finished the first draft. TC helped the portion of first draft. MB and DAH added co-production concept, and made constructive revision.
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Kong, X., Liu, J., Chien, T. et al. A Systematic Network of Autism Primary Care Services (SYNAPSE): A Model of Coproduction for the Management of Autism Spectrum Disorder. J Autism Dev Disord 50, 1847–1853 (2020). https://doi.org/10.1007/s10803-019-03922-4
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DOI: https://doi.org/10.1007/s10803-019-03922-4