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Journal of Autism and Developmental Disorders

, Volume 49, Issue 12, pp 4867–4876 | Cite as

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

  • Elizabeth YoungEmail author
  • Ramanan Aiyadurai
  • Thivia Jegathesan
  • Catherine Brown
  • Nicole Bechard
  • Ripudaman S. Minhas
  • Karen Dillon
  • Jonathon Maguire
Original Paper

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.

Keywords

Autism spectrum disorders Service navigation Applied behaviour analysis (ABA) services Caregiver support services (CSS) 

Notes

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.

Compliance with Ethical Standards

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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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • Elizabeth Young
    • 1
    • 2
    • 4
    • 11
    Email author
  • Ramanan Aiyadurai
    • 2
    • 12
  • Thivia Jegathesan
    • 2
    • 3
    • 5
  • Catherine Brown
    • 1
    • 8
  • Nicole Bechard
    • 1
    • 6
  • Ripudaman S. Minhas
    • 1
    • 2
    • 4
  • Karen Dillon
    • 7
  • Jonathon Maguire
    • 1
    • 2
    • 4
    • 5
    • 9
    • 10
  1. 1.Faculty of MedicineUniversity of TorontoTorontoCanada
  2. 2.PediatricsSt. Michael’s HospitalTorontoCanada
  3. 3.School of Graduate Studies, Institute of Medical ScienceUniversity of TorontoTorontoCanada
  4. 4.Division of Developmental Pediatrics, Department of PediatricsUniversity of TorontoTorontoCanada
  5. 5.Li Ka Shing Knowledge Institute, St. Michael’s HospitalTorontoCanada
  6. 6.Department of PediatricsUniversity of SaskatchewanSaskatoonCanada
  7. 7.Children’s Treatment Network of Simcoe YorkRichmond HillCanada
  8. 8.School of Epidemiology and Public HealthUniversity of OttawaOttawaCanada
  9. 9.Department of Nutritional SciencesUniversity of TorontoTorontoCanada
  10. 10.Institute for Health Policy Management and EvaluationUniversity of TorontoTorontoCanada
  11. 11.Pediatric Ambulatory ClinicsTorontoCanada
  12. 12.University of LiverpoolLiverpoolUK

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