Reducing Disparities in Timely Autism Diagnosis through Family Navigation

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Project Summary Autism spectrum disorder (ASD) is a chronic condition that occurs in almost 1 in every 88 children and conveys lifelong disability in the areas of communication, social interaction, and behavior. Because a determination of ASD made by a qualified health care provider is required to receive autism-specific services, age at diagnosis is a critical marker of timely access to recommended services. Despite progress identifying children at younger ages when interventions to improve outcomes are most successful, disparities in the age of diagnosis persist. The goal of this study is to assess the feasibility and acceptability of a novel application of patient navigation to support families of low-income and minority children, age 15 months to 3 years, who have positive behavioral screens indicating a need for an ASD diagnostic assessment. Patient navigation is rooted in adult cancer care. It has been implemented to reduce institutional and individual level barriers to cancer diagnoses and has demonstrated efficacy in both improving adherence to follow-up visits after a screening abnormality and decreasing the time from an abnormal screen to diagnostic resolution. We have reframed the model from patient to family navigation and will focus on a defined episode of care, beginning with an abnormal autism screen and ending with the completion of the diagnostic assessment. We will conduct a pilot randomized control trial (N=40) to accomplish the following specific aims: 1) field test logistical aspects of randomized study of family navigation, including family navigator training, participant recruitment and flow, delivery and tracking of navigator services, and collection of baseline and follow-up data; 2) obtain empiric estimates of key study parameters to inform future study design, including within-group standard deviation of outcome measures; correlation of outcomes measured at baseline and follow-up, and effect size estimates of the intervention on timely diagnosis and self-reported family outcomes; 3) assess qualitatively, from the perspective of parents and pediatric providers, the feasibility and acceptability of family navigation offered during the episode of care beginning with a suspicious autism screen and ending with diagnostic resolution; and 4) assess the resource utilization and develop a decision analytic model that will allow us to estimate the economic impact of family navigation compared to routine care in low-income and minority children identified as at-risk for delays in ASD diagnostic assessment. The current study proposes to test the feasibility of an intervention to decrease disparities in timely ASD diagnosis that occur at a critical point in the continuum of the delivery of ASD services for young children. The need for support to navigate the complex network of autism services is widely recognized. The proposed project will lay the ground work for a definitive trial of our intervention model. If efficacious, the intervention has the potential for replication and expansion to other childhood behavioral conditions.