The Pediatric Developmental Passport: How to Ensure Our Families Are Accessing the Right Care

Background:  The Pediatric Developmental Passport (passport) is an innovative tracking tool for families of children with autism spectrum disorder (ASD). It provides a mechanism for clearly communicating appropriate regional developmental services, an opportunity to track progress in accessing these developmental services and a valuable summary of the developmental care received by that child for the pediatrician. A qualitative study with parents and health professionals (developmental pediatricians, developmental nurses, pediatricians) lead to the design and iterative review of the passport.

Objectives:  The objective of this study was to determine the generalizability and effectiveness of the passport compared to placebo in a multi-site pragmatic randomized control trial.

Methods: A pragmatic multi-site randomized controlled trial was conducted with families of children between 0-6 years of age diagnosed with ASD. Families from two different models of developmental care were enrolled into the study. One site was a community based developmental consultation clinic and the second site was an academic developmental practice that provides longitudinal follow up. All families included in the study were randomized to receive the passport or placebo. Regional agencies that provided publicly funded ABA and parent education services were contacted directly to obtain accurate contact and access status of recommended developmental services. The effectiveness of the passport at each site was measured via chi square test at a p value of <0.05.

Results:  Forty children with ASD were included and followed in this study, 20 from each site. At the community site, 90% of families that were given the passport contacted ABA services, compared to the 40% in the placebo group (p value = 0.024). There was no significant difference in the proportion of families that contacted ABA services at the academic site (90% in both arms). Comparison of the passport and placebo groups at within each site indicated no significant difference in the proportion of families that contacted parent education services. A significant difference was found in the proportion of families that contacted parent education services between the academic and community sites (60% vs. 19%, p=0.011).

Conclusions: Families that receive a diagnosis from consultation clinics are expected to follow up with a primary care physician. The differences observed in this study indicate that families that receive a diagnosis from this model of healthcare may benefit from further support to contact and access developmental services. The Pediatric Developmental Passport shows evidence as an effective tool to support families post diagnosis in this pilot RCT. With the Passport, the proportion of families that accessed ABA services increased to be equal to those who were followed longitudinally within an academic developmental practice.

Larger trials are being developed to further evaluate the Passport within different types of practices and different populations.