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Increasing Access to Developmental Services for Children with Autism Spectrum Disorder: The Pediatric Developmental Passport Pilot Randomized Trial

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Abstract

The pediatric developmental passport was created to aid service navigation for children with autism spectrum disorder (ASD). A pilot-randomized-control trial was conducted at two developmental clinics. The intervention group received the Passport card versus the control group who received the placebo card. Primary outcome was the proportion of families who contacted ASD services 1-year following diagnosis. Of 40 families, 95% in the intervention group contacted services versus 70% in the control (p = 0.04). All families at the academic site contacted services; at the community site 90% in the intervention group contacted versus 40% in the control (p = 0.02). The Passport shows promise aiding families of children with ASD in service navigation, particularly at community clinics where specialist follow-up is not readily available.

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References

  • Anagnostou, E., Zwaigenbaum, L., Szatmari, P., Fombonne, E., Fernandez, B., Woodbury-Smith, M., et al. (2014). Autism spectrum disorder: Advances in evidence-based practice. Canadian Medical Association Journal,186(7), 509–519.

    Article  Google Scholar 

  • Benchimol, E. I., Walters, T. D., Kaufman, M., Frost, K., Fiedler, K., Chinea, Z., et al. (2011). Assessment of knowledge in adolescents with inflammatory bowel disease using a novel transition tool. Journal of Inflammatory Bowel Disease,17(5), 1131–1137.

    Article  Google Scholar 

  • Bent, C. A., Dissanayake, C., & Barbaro, J. (2015). Mapping the diagnosis of autism spectrum disorders in children aged under 7 years in Australia, 2010–2012. Medical Journal of Australia,202, 317–320.

    Article  Google Scholar 

  • Braiden, H. J., Bothwell, J., & Duffy, J. (2010). Parents’ experience of the diagnostic process for autistic spectrum disorders. Child Care Practices,16(4), 377–389.

    Article  Google Scholar 

  • Brett, D., Warnell, F., McConachie, H., & Pacorr, J. (2016). Factors affecting age at ASD diagnosis in UK: No evidence that diagnosis age has decreased between 2004 and 2014. Journal of Autism and Developmental Disorders,46(6), 1974–1984.

    Article  Google Scholar 

  • Brewer, A. (2018). “We were on our own”: Mothers’ experiences navigating the fragmented system of professional care for autism. Social Science and Medicine,215, 61–68.

    Article  Google Scholar 

  • Broder-Fingert, S., Qin, S., Goupil, J., Rosenberg, J., Augustyn, M., Blum, N., et al. (2018a). A mixed-methods process evaluation of family navigation implementation for autism spectrum disorder. Autism,23(5), 1288–1299.

    Article  Google Scholar 

  • Broder-Fingert, S., Walls, M., Augustyn, M., Beidas, R., Mandell, D., Wiltsey-Stirman, S., … Feinberg, E. (2018b). A hybrid type I randomized effectiveness-implementation trial of patient navigation to improve access to services for children with autism spectrum disorder. BMC Psychiatry, 18(1), 79.

  • Busch, L., Koudys, J. (2017). Evidence-based practices for individuals with autism spectrum disorder: Recommendations for caregivers, practitioners, and policy makers. Resource document. Ontario Association for Behavior Analysis. http://www.behaviourinnovations.com/sites/default/files/PDF/ONTABA%20OSETT-ASD%20REPORT.pdf. Accessed 1 December 2017.

  • Carbone, P., Behl, D., Azor, V., & Murphy, N. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders,40(3), 317–324.

    Article  Google Scholar 

  • Centers for Disease Control and Prevention. (2017). For parents: Vaccines for your children. Department of Health and Human Services. https://www.cdc.gov/vaccines/parents/records-requirements.html. Accessed 1 December 2017

  • Clark, M. L. E., Vinen, Z., Barbaro, J., & Dissanayake, C. (2018). School age outcomes of children diagnosed early and later with autism spectrum disorder. Journal of Autism and Developmental Disorders,48(1), 92–102.

    Article  Google Scholar 

  • Coo, H., Ouellette-Kuntz, H., Lam, M., Yu, C. T., Dewey, D., Bernier, F. P., et al. (2012). Correlates of age at diagnosis of autism spectrum disorders in six Canadian regions. Chronic Disease and Injuries in Canada,32(2), 90–100.

    Google Scholar 

  • Daniels, A. M., & Mandell, D. S. (2014). Explaining differences in age at autism spectrum disorder diagnosis: A critical review. Autism: The International Journal of Research and Practice,18(5), 583–597.

    Article  Google Scholar 

  • Dijkstra, R. F., Braspenning, J. C., Huijsmans, Z., Akkermans, R. P., van Ballegooie, E., ten Have, P., et al. (2005). Introduction of diabetes passports involving both patients and professionals to improve hospital outpatient diabetes care. Diabetes Research and Clinical Practice,68(2), 126–134.

    Article  Google Scholar 

  • Feinberg, E., Abufhele, M., Sandler, J., Augustyn, M., Cabral, H., Chen, N., et al. (2016). Reducing disparities in timely autism diagnosis through family navigation: Results from a randomized pilot trial. Psychiatric Services,67(8), 912–915.

    Article  Google Scholar 

  • Government of Ontario. (2015). Vaccines and immunization. Resource document. Government of Ontario: Queen’s Printer for Ontario. https://www.ontario.ca/page/vaccines. Accessed 1 December 2017.

  • Jones, S., Bremer, E., & Lloyd, M. (2017). Autism spectrum disorder: Family quality of life while waiting for intervention services. Quality of Life Research,26(2), 331–342.

    Article  Google Scholar 

  • Kaufman, M., & Pinzon, J. (2007). Transition to adult care for youth with special health care needs. Paediatr Child Health,12(9), 785–788.

    Article  Google Scholar 

  • Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Jr., Leventhal, B. L., DiLavore, P. C., et al. (2000). The autism diagnostic observation schedule—generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism Developmental Disorder,30(3), 205–223.

    Article  Google Scholar 

  • Mandell, D. S., Listerud, J., Levy, S., & Pinto-Martin, J. (2002). Race differences in the age of diagnosis among Medicaid-eligible children with Autism. Child & Adolscent Psychiatry,41(12), 1447–1453.

    Article  Google Scholar 

  • Mandell, D. S., Novak, M. M., & Zubritsky, C. D. (2005). Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics,116(6), 1480–1486.

    Article  Google Scholar 

  • Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., et al. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health,99(3), 493–498.

    Article  Google Scholar 

  • Mulligan, J., MacCulloch, R., Good, B., & Nicholas, D. B. (2012). Transparency, hope, and empowerment: A model for partnering with parents of a child with autism spectrum disorder at diagnosis and beyond. Social Work Mental Health,10(4), 311–330.

    Article  Google Scholar 

  • Office of the Auditor General of Ontario. (2015). Annual report to the legislative assembly—Section 4.01 autism service and support for children. Resource document. Ministry of Children and Youth Services. http://www.auditor.on.ca/en/content/annualreports/arreports/en15/4.01en15.pdf. Accessed 1 December 2017.

  • Ooi, K. L., Ong, Y. S., Jacob, S. A., & Khan, T. M. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatry Disease Treatment,12, 745–762.

    Google Scholar 

  • Ouellette-Kuntz, H. M., Coo, H., Lam, M., Yu, C. T., Breitenbach, M. M., Hennessey, P. E., et al. (2009). Age at diagnosis of autism spectrum disorders in four regions of Canada. Canadian Journal of Public Health,100(4), 268–273.

    Article  Google Scholar 

  • Patel, R.A. (2014). Design for use and acceptance of tracking tools in health care. Dissertation document. Biomedical Informatics and Medical Education, Washington University. https://digital.lib.washington.edu/researchworks/handle/1773/25153. Accessed 1 December 2017.

  • Penner, M., King, G., Anagnostou, E., Shouldice, M., & Hepburn, C. M. (2015). 170: Community general paediatricians’ barriers to providing autism spectrum disorder diagnoses. Paediatric Child Health,120(5), e95–e95.

    Article  Google Scholar 

  • Rogers, C. L., Goddard, L., Hill, E. L., Henry, L. A., & Crane, L. (2016). Experiences of diagnosing autism spectrum disorder: A survey of professionals in the United Kingdom. Autism,20(7), 820–831.

    Article  Google Scholar 

  • Saibil, F., Lai, E., Hayward, A., Yip, J., & Gilbert, C. (2008). Self-management for people with inflammatory bowel disease. Canadian Journal of Gastroenterology,3, 281–287.

    Article  Google Scholar 

  • Select Committee on Developmental Services. (2014). Inclusion and opportunity: A new path for developmental services in Ontario—Final report. Resource document. Ontario Legislative Assembly. http://www.ontla.on.ca/committee-proceedings/committee-reports/files_pdf/SCDSFinalReportEnglish.pdf. Accessed 1 December 2017.

  • Senate Standing Committee on Social Affairs. (2007). Final report on the enquiry on the funding for treatment of autism: Pay now or pay later: Autism families in crisis. Resource Document. Senate of Canada. http://publications.gc.ca/collections/collection_2007/sen/YC17-391-1-01E.pdf. Accessed 1 December 2017.

  • Shrestha, M., & Shrestha, R. (2014). Symptom recognition to diagnosis of autism in Nepal. Journal of Autism and Developmental Disorders,44(6), 1483–1485.

    Article  Google Scholar 

  • Sun, X., Allison, C., Wei, L., Matthews, F., Auyeung, B., Wu, Y., et al. (2019). Autism prevalence in China is comparable to Western prevalence. Molecular Autism,10(1), 7.

    Article  Google Scholar 

  • Swan, M. (2006). Emerging patient-driven health care models: An examination of health social networks, consumer personalized medicine and quantified self-tracking. International Journal of Environmenal Research and Public Health,6(2), 492–525.

    Article  Google Scholar 

  • Tzanakaki, P., Grindle, C., Hastings, R. P., Hughes, J. C., Kovshoff, H., & Remington, B. (2012). How and why do parents choose early intensive behavioral intervention for their young child with autism? Education and Training Autism Developmental Disability,47(1), 58–71.

    Google Scholar 

  • Ventola, C. L. (2014). Mobile devices and apps for health care professionals: Uses and benefits. P & T: Peer-Reviewed Journal for Formulary Management,39(5), 356–364.

    Google Scholar 

  • Wolf, A., Fors, A., Ulin, K., Thorn, J., Swedberg, K., & Ekman, I. (2016). An eHealth diary and symptom-tracking tool combined with person-centered care for improving self-efficacy after a diagnosis of acute coronary syndrome: A substudy of a randomized controlled trial. Journal Medical Internet Research,18(2), e40.

    Article  Google Scholar 

  • Zwaigenbaum, L., Bauman, M., Choueiri, R., Kasari, C., Carter, A., Granpeesheh, D., et al. (2015). Early intervention for children with autism spectrum disorder under 3 years of age: Recommendations for practice and research. Pediatrics,136, S60.

    Article  Google Scholar 

  • Zwaigenbaum, L., Bryson, S., Lord, C., Rogers, S., Carter, A., Carver, L., et al. (2009). Clinical assessment and management of toddlers with suspected autism spectrum disorder: Insights from studies of high-risk infants. Pediatrics,123(5), 1383–1391.

    Article  Google Scholar 

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Acknowledgments

The authors acknowledge the teams at the Department of Pediatrics at St. Michael’s Hospital, and the Developmental Assessment and Consultation Services (DACS) clinic of York Region for their support in the pilot study. In particular we would like to acknowledge the efforts of Joelene Huber MD PhD (Pediatrics, St. Michael’s Hospital, Toronto, ON, Canada; Faculty of Medicine, University of Toronto, Toronto, ON, Canada; Department of Pediatrics, University of Toronto, Toronto, ON, Canada; School of Graduate Studies, Department of Rehabilitative Sciences (Department of Speech-Language Pathology), University of Toronto, Toronto, ON, Canada; Division of Neurology, The Hospital for Sick Children, Toronto, ON, Canada; Department of Pediatrics, Division of Developmental Pediatrics, University of Toronto, Toronto, ON, Canada), Umberto Cellupica MD (Department of Pediatrics, University of Toronto, Toronto, ON, Canada), Dr. Michael Sgro MD (Chief of Pediatrics, St. Michael’s Hospital, Toronto, ON, Canada; Director of Research, Department of Pediatrics, St. Michael’s Hospital, Toronto, ON, Canada; Pediatrics, St. Michael’s Hospital, Toronto, ON, Canada; Associate Staff Physician, Neonatology, Pediatrics, The Hospital for Sick Children, Toronto, ON, Canada, St. Michael’s Hospital; Associate Scientist, Keenan Research Centre, Centre for Urban Health Solutions, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, ON, Canada), Gerald Friedman MD (Department of Pediatrics, University of Toronto, Toronto, ON, Canada; Pediatric Neurology, Mackenzie Health Hospital, Vaughan, ON, Canada), Saba Merchant MD (Department of Pediatrics, University of Toronto, Toronto, ON, Canada; Developmental Pediatrician, Children’s Treatment Network, Toronto, ON, Canada), and Stephanie Hughes (Obstetrics and Gynaecology, McMaster University, Hamilton, ON, Canada) for their support of the project. EY conceived of the study and participated in its design, the methodology, funding acquisition, supervision/oversight, interpretation of the data, and drafted the initial manuscript as well as reviewed and edited subsequent manuscript drafts; RA participated in the investigation and coordination in the study, data curation, formal analysis, the administration of the measurement, and helped to draft the manuscript; TJ participated in the methodology, investigation and coordination in the study, funding acquisition, formal analysis, supervision/oversight and helped draft the initial manuscript as well as reviewed and edited subsequent manuscript drafts; CB participated in the conceptualization/design of the study, the methodology and helped draft the initial manuscript as well as reviewed and edited subsequent manuscript drafts; RM participated in the recruitment of resources for the study and helped to draft the manuscript; KD participated in the recruitment of resources for the study and helped to draft the manuscript; JM participated in the conceptualization/design of the study, the methodology, recruitment of resources, supervision/oversight, and helped to draft the manuscript. All authors read and approved the final manuscript.

Funding

Funding for this study was provided through the Ministry of Health and Long-Term Care (MOHLTC)’ s Innovation Fund program (Grant Nos. SMH-15-015, SMHAIF-064). The MOHLTC is the provincial governing body for healthcare services in Ontario, Canada. The MOHLTC was not involved in any aspect of the research process. In-kind support was provided by the Department of Pediatrics at St. Michael’s Hospital. The publisher will not be held legally responsible should there be any claims for compensation. The work described in this manuscript has not been published before and is not under consideration for publication anywhere else. Its publication has been approved by all co-authors and all responsible governing authorities at St. Michael’s Hospital. The publisher will not be held legally responsible should there be any claims for compensation. There are no prior publications or submissions with any overlapping information, including studies and patients.

Author information

Author notes

  1. Nicole Bechard

    Present address: Department of Pediatrics, University of Saskatchewan, Saskatoon, SK, Canada

  2. Catherine Brown

    Present address: School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON, Canada

  3. Ramanan Aiyadurai

    Present address: University of Liverpool, Liverpool, England, UK

Authors and Affiliations

  1. Faculty of Medicine, University of Toronto, Toronto, ON, Canada

    Elizabeth Young, Catherine Brown, Nicole Bechard, Ripudaman S. Minhas & Jonathon Maguire

  2. Pediatrics, St. Michael’s Hospital, Toronto, ON, Canada

    Elizabeth Young, Ramanan Aiyadurai, Thivia Jegathesan, Ripudaman S. Minhas & Jonathon Maguire

  3. School of Graduate Studies, Institute of Medical Science, University of Toronto, Toronto, ON, Canada

    Thivia Jegathesan

  4. Division of Developmental Pediatrics, Department of Pediatrics, University of Toronto, Toronto, ON, Canada

    Elizabeth Young, Ripudaman S. Minhas & Jonathon Maguire

  5. Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, ON, Canada

    Thivia Jegathesan & Jonathon Maguire

  6. Children’s Treatment Network of Simcoe York, Richmond Hill, ON, Canada

    Karen Dillon

  7. Department of Nutritional Sciences, University of Toronto, Toronto, ON, Canada

    Jonathon Maguire

  8. Institute for Health Policy Management and Evaluation, University of Toronto, Toronto, ON, Canada

    Jonathon Maguire

  9. Pediatric Ambulatory Clinics, 61 Queen St. East, 2nd Floor, Toronto, ON, M5C 2T2, Canada

    Elizabeth Young

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  1. Elizabeth Young
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Correspondence to Elizabeth Young.

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Conflict of interest

All authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors.

Informed Consent

Informed consent was obtained from all individual participants included in the study. Informed consent was obtained from parents for permission to allow the RC to contact their regional ABA services and CSS directly.

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Young, E., Aiyadurai, R., Jegathesan, T. et al. Increasing Access to Developmental Services for Children with Autism Spectrum Disorder: The Pediatric Developmental Passport Pilot Randomized Trial. J Autism Dev Disord 49, 4867–4876 (2019). https://doi.org/10.1007/s10803-019-04199-3

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