Exploring the Efficacy and Usability of the My Autism Passport (MAP).

NCT04259671 | Completed

• 1 other identifier: REB 18-168
• Study Type: interventional
• Target: 34
• Locations: 1 country
• Sites: 1

Brief Summary

To address developmental service navigation by families of children with autism spectrum disorder (ASD) an innovative paper-based tracking tool called the Pediatric Developmental Passport (Passport) was created by Dr. Elizabeth Young at St. Michael's Hospital. The Passport was adapted through a partnership between St. Michael's hospital and Autism Films Inc. into a mobile application called My Autism Passport (MAP). MAP allows families to learn about, and manage publicly-funded ASD services from their mobile device. Users can locate resources within their region, and track their progress in accessing services across multiple service agencies. The user can also set reminders on MAP which will be synced with their calendars, record notes, and read short summaries of the services offered by regional agencies. In this way, the application keeps families engaged, and allows them to take control of their child's care. The feasibility of the MAP mobile application will be assessed by clinicians and end users. Clinicians from five developmental diagnostic organizations that have more than one year of experience diagnosing and providing follow up care to children with ASD will be informed of the study and invited to participate in recruitment in their respective practices. Caregivers of a child that is given a new diagnosis of ASD will be invited to participate in the study and be randomized to the control group or non control group and may have access to the application for 18 months. During the 18 month period, data on how caregivers are using the app will be collected. At 6, 12 and 18 months, caregivers will be invited to participate in questionnaires on number of services accessed, parent stress levels and self-efficacy levels. Questionnaires and interviews will be quantitatively analyzed for differences between groups, and findings will be used to improve the app prior to a larger prospective clinical trial.

Conditions

Autism Spectrum Disorder

Outcome Measures

Primary Outcomes (3)

• Number of services contacted at 6 months

  The number of services caregivers reported contacting

  6 months after diagnosis

• Number of services contacted at 12 months

  The number of services caregivers reported contacting

  12 months after diagnosis

• Number of services contacted at 18 months

  The number of services caregivers reported contacting

  18 months after diagnosis

Secondary Outcomes (6)

• Parental Stress Scale at 6 months

  6 months

• Parental Stress Scale at 12 months

  12 months

• Parental Stress Scale at 18 months

  18 months

• Parent Empowerment and Efficacy Measure at 6 months

  6 months

• Parent Empowerment and Efficacy Measure at 12 months

  12 months

Study Arms (2)

Intervention- My Autism Passport App

EXPERIMENTAL

Families will be given the application to upload to their mobile device and will be provided information on how to use the App by the research team. The contact information for a member of the research team who will be able to provide technical support will be available on the consent form. Families will use the mobile application for a total of 18 months. Given that this is a pragmatic trial of a tool that tracks services, it also may be used to communicate service access to other providers.

Device: My Autism Passport (MAP) Application

Control-Standard of care

NO INTERVENTION

Families in the control group will continue with standard of clinical care, and receive any of the usual supports their clinic and region provides, including access to physicians, service navigators, social workers, nurses, etc.

Interventions

My Autism Passport (MAP) Application DEVICE

Families will be given the application to upload to their mobile device and will be provided information on how to use the App by the research team. MAP is a mobile alternative to the paper version, and offers additional benefits such as the ability to set reminders, see regional developmental service agencies and other resources on a map, and directs the caregiver to information so that they may further their understanding about how to support their child.

Intervention- My Autism Passport App

Eligibility Criteria

• Age: 1 Month - 6 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17)

You may qualify if:

• Families of children between 0-6 years of age, who have been diagnosed with autism spectrum disorder within the past month from five sites within the Greater Toronto Area that conduct developmental assessments will be eligible to participate in the study.

You may not qualify if:

• Caregivers who cannot read and communicate well enough in English to use an App.
• Caregivers who live outside of the greater toronto area.

Sponsors & Collaborators

• Unity Health Toronto: lead
• Autism Speaks: collaborator

Study Sites (1)

Unity Health Toronto, St.Michael's Hospital

Toronto, Ontario, M5B 1W8, Canada

Location

Related Publications (1)

• Young E, Aiyadurai R, Jegathesan T, Brown C, Bechard N, Minhas RS, Dillon K, Maguire J. Increasing Access to Developmental Services for Children with Autism Spectrum Disorder: The Pediatric Developmental Passport Pilot Randomized Trial. J Autism Dev Disord. 2019 Dec;49(12):4867-4876. doi: 10.1007/s10803-019-04199-3.

  PMID: 31485815 BACKGROUND

MeSH Terms

Conditions

Autism Spectrum Disorder

Condition Hierarchy (Ancestors)

Child Development Disorders, Pervasive; Neurodevelopmental Disorders; Mental Disorders

Study Officials

• Elizabeth Young, MD

  Unity Health Toronto

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: DOUBLE
• Who Masked: INVESTIGATOR, OUTCOMES ASSESSOR
• Masking Details: Given that MAP's use is to assist parents in communication and service navigation, clinicians will be informed by the study team which family has been allocated to the MAP group. For children allocated to the control group, clinicians will be instructed to continue with usual clinical care. In the Developmental Passport Pilot study, clinicians were blinded to the intervention and the study team found this was a limitation as families were not able to share aspects of their service navigation with their health care providers (Young et al, 2019). As such, we will not blind members of the clinical team to intervention but allow both the intervention and usual care to co-occur within the pragmatic, real life setting.
• Purpose: OTHER
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Model Details: Families of children between 0-6 years of age with a new ASD diagnosis who have consented to the study will be randomly assigned to either the control group (standard of care) or the intervention group (provided the MAP app). They will be in their randomly assigned group for the entire duration of the study.

Study Record Dates

• First Submitted: February 3, 2020
• First Posted: February 6, 2020
• Study Start: March 1, 2020
• Primary Completion: February 28, 2023
• Study Completion: February 28, 2023
• Last Updated: March 28, 2025

Record last verified: 2025-03

Data Sharing

• IPD Sharing: Will not share

Locations

CA (1)