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Interagency Autism Coordinating Committee (IACC)
Autism Research Database
Office of Autism Research Coordination (OARC)
 
Project Element Element Description

Project Title

Project Title

Reducing disparities in Rimely Autism Diagnosis through Family Navigation

Principal Investigator

Principal Investigator

Feinberg, Emily

Description

Description

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.

Funder

Funder

Agency for Healthcare Research and Quality

Fiscal Year Funding

Fiscal Year Funding

0

Current Award Period

Current Award Period

2013-2015

Strategic Plan Question

Strategic Plan Question

Question 1: When Should I Be Concerned?

Strategic Plan Objective

Strategic Plan Objective

Green dot: Objective has greater than or equal to the recommended funding. 1SC. Conduct at least three studies to identify reasons for the health disparities in accessing early screening and diagnosis services, including identification of barriers to implementation of and access to screening, diagnosis, referral, and early intervention services among diverse populations, as defined by socioeconomic status, race, ethnicity, and gender of the child, by 2012. IACC Recommended Budget: $2,000,000 over 2 years.

Project Link

Project Link

Reducing disparities in Rimely Autism Diagnosis through Family Navigation (External web link)

Institution

Institution

Boston Medical Center

State/Country

State/Country

Massachusetts

Project Number

Project Number

R03 HS22155-01 (2015)

Federal or Private?

Federal or Private?

Federal

Received ARRA Funding?

Received ARRA Funding?

No

History/Related Projects

History/Related Projects

Reducing disparities in Rimely Autism Diagnosis through Family Navigation | 99999 | 2013 | R03 HS22155-01
Reducing disparities in Rimely Autism Diagnosis through Family Navigation | 0 | 2014 | R03 HS22155-01 (2015)

 
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