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A Scoping Review of Targeted Interventions and Training to Facilitate Medical Encounters for School-Aged Patients with an Autism Spectrum Disorder

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Abstract

Individuals with an autism spectrum disorder (ASD) have a greater number of healthcare provider interactions than individuals without ASD. The obstacles to patient-centered care for this population, which include inflexibility of hospital environments, limited resources, and inadequate training, has been documented. However, there is little knowledge on efforts to address such concerns. A scoping review was conducted and the systematic search of the literature resulted in 23 relevant studies. The predominant themes include the use of data collection instruments, application of evidence-based practices and resources, and training of providers. The results of this review have implications for practitioners and future research to adapt and improve upon the provision of medical care for individuals with ASD across the lifespan.

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References

  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, D.C.: American Psychiatric Association.

    Google Scholar 

  • Arksey, H., & O’Malley, L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19–32.

    Google Scholar 

  • Balakas, K., Gallaher, C. S., & Tilley, C. (2015). Optimizing perioperative care for children and adolescents with challenging behaviors. The American Journal of Maternal Child Nursing, 40(3), 153–159.

    PubMed  Google Scholar 

  • Boyle, C. A., Boulet, S., Schieve, L. A., Cohen, R. A., Blumberg, S. J., Yeargin-Allsopp, M., et al. (2011). Trends in the prevalence of developmental disabilities in US children, 1997–2008. Pediatrics, 127(6), 1034–1042.

    PubMed  Google Scholar 

  • *Broder-Fingert, S., Shui, A., Ferrone, C., Dorthea, I., Cheng, E., Giauque, A., et al. (2016). A pilot study of autism-specific care plans during hospital admission. Pediatrics, 137(S2), S196–S204.

    PubMed  Google Scholar 

  • Bultas, M. W. (2012). The health care experiences of the preschool child with autism. Journal of Pediatric Nursing, 27, 460–470.

    PubMed  Google Scholar 

  • *Bultas, M. W., McMillin, S. E., & Zand, D. H. (2016). Reducing barriers to care in the office-based health care setting for children with autism. Journal of Pediatric Health Care, 30(1), 5–14.

    PubMed  Google Scholar 

  • *Carter, J., Broder-Fingert, S., Neumeyer, A., Giauque, A., Kao, A., & Iyasere, C. (2017). Brief report: Meeting the needs of medically hospitalized adults with autism: A provider and patient toolkit. Journal of Autism and Developmental Disorders, 47, 1510–1529.

    PubMed  Google Scholar 

  • *Chebuhar, A., McCarthy, A. M., Bosch, J., & Baker, S. (2013). Using picture schedules in medical settings for patients with an autism spectrum disorder. Journal of Pediatric Nursing, 28(2), 125–134.

    PubMed  Google Scholar 

  • Chiri, G., & Warfield, M. E. (2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health Journal, 16, 1081–1091.

    PubMed  Google Scholar 

  • Croen, L. A., Najjar, D. V., Ray, T., Lotspeich, L., & Bernal, P. (2006). A comparison of health care utilization and costs of children with and without autism spectrum disorders in a large group-model health plan. Pediatrics, 118, e1203–e1211.

    PubMed  Google Scholar 

  • Davis, I. T. E., Moree, B. N., Dempsey, T., Reuther, E. T., Fodstad, J. C., Hess, J. A., et al. (2011). The relationship between autism spectrum disorders and anxiety: The moderating effect of communication. Research in Autism Spectrum Disorders, 5, 324–329.

    Google Scholar 

  • *Drake, J., Johnson, N., Stoneck, A. V., Martinez, D. M., & Massey, M. (2012). Evaluation of a coping kit for children with challenging behaviors in a pediatric hospital. Pediatric Nursing, 38(4), 215–221.

    PubMed  Google Scholar 

  • *Gabriels, R. L., Agnew, J. A., Beresford, C., Morrow, M., Mesibov, G., & Wamboldt, M. (2012). Improving psychiatric hospital care for pediatric patients with autism spectrum disorders and intellectual disabilities. Autism Research and Treatment. https://doi.org/10.1155/2012/685053

    Article  PubMed  PubMed Central  Google Scholar 

  • Giarelli, E., Nocera, R., Turchi, R., Hardie, T. L., Pagano, R., & Yuan, C. (2014). Sensory stimuli as obstacles to emergency care for children with autism spectrum disorder. Advanced Emergency Nursing Journal, 36(2), 145–163.

    PubMed  Google Scholar 

  • Gurney, J. G., McPheeters, M. L., & Davis, M. M. (2006). Parental report of health conditions and health care use among children with and without autism: National Survey of Children’s Health. Archives Of Pediatrics & Adolescent Medicine, 160(8), 825–830.

    Google Scholar 

  • Iannuzzi, D., Cheng, E., Broder-Fingert, S., & Bauman, M. (2015). Brief report: Emergency department utilization by individuals with autism. Journal of Autism & Developmental Disorders, 45(4), 1096–1102.

    Google Scholar 

  • Isong, I. A., Hanson, E., Ware, J., Nelson, L. P., Rao, S. R., Holifield, C., & Iannuzzi, D. (2014). Addressing dental fear in children with autism spectrum disorders: A randomized controlled pilot study using electronic screen media. Clinical Pediatrics, 53(3), 230–237.

    PubMed  Google Scholar 

  • Johnson, H. L., & DeLeon, P. H. (2016). Accessing care for children with special health care needs. Practice Innovations, 1(2), 105–116.

    Google Scholar 

  • Johnson, N., Bekhet, A., Robinson, K., & Rodriguez, D. (2014). Attributed meanings and strategies to prevent challenging behaviors of hospitalized children with autism: Two perspectives. Journal of Pediatric Health Care, 28(5), 386–393.

    PubMed  Google Scholar 

  • *Johnson, N., Bree, O., Lalley, E. E., Rettler, K., Grande, P., Gani, M. O., & Ahamed, S. I. (2014). Effect of a social script iPad application for children with autism going to imaging. Journal of Pediatric Nursing, 29(6), 651–659.

    PubMed  Google Scholar 

  • *Johnson, N., Lashley, J., Stonek, A., & Bonjour, A. (2012). Children with developmental disabilities at a pediatric hospital: Staff education to prevent and manage challenging behaviors. Journal of Pediatric Nursing, 27, 742–749.

    PubMed  Google Scholar 

  • Johnson, N. L., & Rodriguez, D. (2013). Children with autism spectrum disorder at a pediatric hospital: A systematic review of the literature. Pediatric Nursing, 39(3), 131–141.

    PubMed  Google Scholar 

  • *Jolly, A. A. (2015). Handle with care: Top ten tips a nurse should know before caring for a hospitalized child with autism spectrum disorder. Pediatric Nursing, 41(1), 11–16.

    PubMed  Google Scholar 

  • Kamat, P. P., Bryan, L. N., McCracken, C. E., Simon, H. K., Berkenbosch, J. W., & Grunwell, J. R. (2018). Procedural sedation in children with autism spectrum disorders: A survey of current practice patterns of the society for pediatric sedation members. Pediatric Anesthesia, 28(6), 552–557.

    PubMed  Google Scholar 

  • Karpur, A., Lello, A., Frazier, T., Dixon, P. J., & Shih, A. J. (2019). Health disparities among children with autism spectrum disorders: Analysis of the National Survey of Children’s Health 2016. Journal of Autism and Developmental Disorders, 49(4), 1652–1664.

    PubMed  Google Scholar 

  • *Kennedy, R., & Binns, F. (2014). Communicating and managing children and young people with autism and extensive burn injury. Wounds UK, 10(3), 1–5.

    Google Scholar 

  • *Kennedy, R., Binns, F., Brammer, A., Grant, J., Bowen, J., & Morgan, R. (2016). Continuous service quality improvement and change management for children and young people with autism and their families: A model for change. Comprehensive Child and Adolescent Nursing, 39(3), 192–214.

    Google Scholar 

  • Kiln, A., McPartland, J., & Volkmar, F. (2005). Asperger’s syndrome. In F. Volkmar, R. Paul, A. Kiln, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (Vol. 1, pp. 88–125). New York: Wiley.

    Google Scholar 

  • Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006. Pediatrics, 122, e1149–e1158.

  • Kopecky, K., Broder-Fingert, S., Iannuzzi, D., & Connors, S. (2013). The needs of hospitalized patients with autism spectrum disorders: A parent survey. Clinical Pediatrics, 52(7), 652–660.

    PubMed  Google Scholar 

  • Koski, S., Gabriels, R. L., & Beresford, C. (2016). Interventions for paediatric surgery patients with comorbid autism spectrum disorder: A systematic literature review. Archives of Disease in Childhood, 101(12), 1090–1094.

    PubMed  Google Scholar 

  • Lai, M. C., Lombardo, M. V., & Baron-Cohen, S. (2014). Autism. Lancet, 383, 896–910.

    PubMed  Google Scholar 

  • Levac, D., Colquhoun, H., & O’Brien, K. K. (2010). Scoping studies: Advancing the methodology. Implementation Science, 5(69), 1–9.

    Google Scholar 

  • Liptak, G. S., Stuart, T., & Auinger, P. (2006). Health care utilization and expenditures for children with autism: Data from U.S. national samples. Journal of Autism and Developmental Disorders, 36(7), 871–879.

    PubMed  Google Scholar 

  • *Lucarelli, J., Welchons, L., Sideridis, G., Sullivan, N. R., Chan, E., & Weissman, L. (2018). Development and evaluation of an educational initiative to improve hospital personnel preparedness to care for children with autism spectrum disorder. Journal of Developmental and Behavioral Pediatrics, 39(5), 358–364.

    PubMed  Google Scholar 

  • Lui, 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.

    Google Scholar 

  • Maenner, M. J., Shaw, K. A., Baio, J., et al. (2020). Prevalence of Autism spectrum disorder among children aged 8 years — Autism and developmental disabilities monitoring network, 11 Sites, United States. MMWR Surveill Summ, 69(4), 1–12. https://doi.org/10.15585/mmwr.ss6904a1

    Article  PubMed  PubMed Central  Google Scholar 

  • Mayes, S. D., Calhoun, S. L., Aggarwal, R., Baker, C., Mathapati, S., Anderson, R., & Petersen, C. (2012). Explosive, oppositional, and aggressive behavior in children with autism compared to other clinical disorders and typical children. Research in Autism Spectrum Disorders, 6(1), 1–10.

    Google Scholar 

  • *McGonigle, J., Migyanka, J., Glor-Scheib, S., Cramer, R., Fratangeli, J., Hegde, G., et al. (2014a). Development and evaluation of educational materials for pre-hospital and emergency department personnel on the care of patients with autism spectrum disorder. Journal of Autism and Developmental Disorders, 44, 1252–1259.

    PubMed  Google Scholar 

  • *McGonigle, J. J., Venkat, A., Beresford, C., Campbell, T. P., & Gabriels, R. L. (2014b). Management of agitation in individuals with autism spectrum disorders in the emergency department. Child and Adolescent Psychiatric Clinics of North America, 23(1), 83–95.

    PubMed  Google Scholar 

  • *McGuire, K., Fung, L. K., Hagopian, L., Vasa, R. A., Mahajan, R., Bernal, P., et al. (2016). Irritability and problem behavior in autism spectrum disorder: A practice pathway for pediatric primary care. Pediatrics, 137(Suppl 2), S136–S148.

    PubMed  Google Scholar 

  • Minnes, P., & Steiner, K. (2009). Parent views on enhancing the qual- ity of health care for their children with fragile X syndrome, autism or Down syndrome. Child: Care, Health and Development, 35(2), 250–256.

    Google Scholar 

  • Myers, S. M., & Johnson, C. P. (2007). Management of children with autism spectrum disorders. Pediatrics, 120, 1162–1182.

    PubMed  Google Scholar 

  • National Autism Center. (2015). Findings and conclusions: National standards project, phase 2: Addressing the need for evidence-based practice guidelines for autism spectrum disorder. Randolph, MA: National Autism Center.

    Google Scholar 

  • Nicholas, D. B., Zwaigenbaum, L., Muskat, B., Craig, W. R., Newton, A. S., Cohen-Silver, J., et al. (2016). Toward practice advancement in emergency care for children with autism spectrum disorder. Pediatrics, 137, S205–S211.

    PubMed  Google Scholar 

  • *Pratt, K., Baird, G., & Gringras, P. (2012). Ensuring successful admission to hospital for young people with learning difficulties, autism and challenging behaviour: A continuous quality improvement and change management programme. Child Care, Health, and Development, 38(6), 789–797.

    Google Scholar 

  • Rhoades, R. A., Scarpa, A., & Salley, B. (2007). The importance of physician knowledge of autism spectrum disorder: Results of a parent survey. BMC Pediatrics., 7, 37.

    PubMed  PubMed Central  Google Scholar 

  • *Samet, D., & Luterman, S. (2019). See-Hear-Feel-Speak: A protocol for improving outcomes in emergency department interactions with patients with autism spectrum disorder. Pediatric Emergency Care, 35(2), 157–159.

    PubMed  Google Scholar 

  • *Scarpinato, N., Bradley, J., Kurbjun, K., Bateman, X., Holtzer, B., & Ely, B. (2010). Caring for the child with an autism spectrum disorder in the acute care setting. Journal for Specialists Pediatric Nursing, 15(3), 244–254.

    Google Scholar 

  • *Souders, M., Freeman, K., DePaul, D., & Levy, S. (2002). Caring for children and adolescents with autism who require challenging procedures. Pediatric Nursing, 28(6), 555–562.

    PubMed  Google Scholar 

  • Suarez, M. (2012). Sensory processing in children with autism spectrum disorders and impact on functioning. Pediatric Clinics of North America, 59(1), 203–214.

    PubMed  Google Scholar 

  • *Vaz, I. (2010). Improving the management of children with learning disability and autism spectrum disorder when they attend hospital. Child: Care, Health & Development, 36(6), 753–755.

    Google Scholar 

  • *Vaz, I. (2013). Visual symbols in healthcare settings for children with learning disabilities and autism spectrum disorder. British Journal of Nursing, 22(3), 156–159.

    PubMed  Google Scholar 

  • *Venkat, A., Migyanka, J., Cramer, R., & McGonigle, J. (2016). An instrument to prepare for acute care of the individual with autism spectrum disorder in the emergency department. Journal of Autism and Developmental Disorders, 46, 2565–2569.

    PubMed  Google Scholar 

  • WHO. (2013). Autism spectrum disorders & other developmental disorders—From raising awareness to building capacity. Geneva: Meeting Report of World Health Organization.

    Google Scholar 

  • Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucha-rczyk, S., et al. (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism and Developmental Disorders, 45(7), 1951–1966.

    PubMed  Google Scholar 

  • Wu, C. M., Kung, P. T., Li, C. I., & Tsai, W. C. (2015). The difference in medical utilization and associated factors between children and adolescents with and without autism spectrum disorders. Research in Developmental Disabilities, 36, 78–86.

  • *Zanotti, J. M. (2018). Handle with care: Caring for children with autism spectrum disorder in the ED. Nursing, 48(2), 50–55.

    PubMed  Google Scholar 

  • Zuckerman, K. E., Lindly, O. J., Bethell, C. D., & Kuhlthau, K. (2014). Family impacts among children with autism spectrum disorder: The role of health care quality. Academic Pediatrics, 14(4), 398–407.

    PubMed  PubMed Central  Google Scholar 

  • Zwaigenbaum, L., Nicholas, D., Muskat, B., Kilmer, C., Newton, A., Craig, W., & Sharon, R. (2016). Perspectives of health care providers regarding emergency department care of children and youth with autism spectrum disorder. Journal Of Autism & Developmental Disorders, 46(5), 1725–1736.

    Google Scholar 

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Authors and Affiliations

  1. Department of Special Education, College of Education, Towson University, 8000 York Road, Psychology Building, Towson, MD, 21252, USA

    Jennifer L. Kouo

  2. Division of Pediatric Emergency Medicine, Department of Pediatrics, Johns Hopkins Hosptial, Baltimore, MD, 21287, USA

    Theodore S. Kouo

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  1. Jennifer L. Kouo
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  2. Theodore S. Kouo
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JK conceived of the study; participated in its design and coordination; participated in collection, interpretation and analysis of data; and drafted the manuscript. TK participated in the design and coordination, interpretation and analysis of the data, and helped to draft the manuscript. Both authors read and approved the final manuscript.

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Correspondence to Jennifer L. Kouo.

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Kouo, J.L., Kouo, T.S. A Scoping Review of Targeted Interventions and Training to Facilitate Medical Encounters for School-Aged Patients with an Autism Spectrum Disorder. J Autism Dev Disord 51, 2829–2851 (2021). https://doi.org/10.1007/s10803-020-04716-9

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