173: The Pediatric Developmental Passport: How to Ensure Families are Accessing the Right Care

Abstract

The Pediatric Developmental Passport (Passport) is an ongoing initiative that aims to develop, assess and implement a tool that is designed to be used jointly by pediatricians and families with a child who has received a new developmental diagnosis of Autism Spectrum Disorder (ASD). Previous research projects have led to the design of the Passport. The aim of this phase of the study is to pilot test the passport in a pediatric setting to determine its usability among families with a child diagnosed with ASD between 0–6 years of age. A pragmatic randomized controlled trial was conducted. Children referred for a developmental assessment and diagnosed with ASD between 0–6 were randomized to receive the passport (intervention) or the placebo (control). All families were followed for one year. Primary outcome was time of first contact with developmental agency. Secondary outcomes included 1) length of time it takes families to meet the agency directly and 2) proportion of total recommendations accessed by families. Additional exploratory outcomes were 1) patient satisfaction and 2) impact of socio-economic status on the effect of the passport on primary and secondary outcomes. The passport is currently being evaluated at multiple pediatric sites. Preliminary results reveal forty-one percent of families were Non-Canadian born who predominantly came from Asia. Families were predominantly Caucasian (41%), Asian (29%), and African American (12%). The income status of families were evenly distributed with 29% families making less than $24000, between $50, 00–74,999 and above $100,000. Although all families in both groups accessed Applied Behavior Analysis (ABA) services, families from the passport group contacted services in significantly less time (9 days vs 14 days). The passport allowed pediatricians to discover that early intervention services and speech and language pathology (services recommended by developmental pediatricians) were more often accessed prior to a diagnosis due to community endorsement. The developmental pediatricians felt the passport helped increase their efficiency at communicating recommendations to families. All families were highly satisfied with the passport and reported it to reduce stress and anxiety. The passport is an innovative practical tool that has shown proof of concept and usability among families diagnosed with ASD and developmental pediatricians. Further evaluation of the passport at the general pediatric level is being planned. We would also like to adapt the passport into a mobile application or online application, as suggested by caregivers.