In 2016, US Preventative Services Task Force (USPSTF) concluded that there is insufficient evidence (grade ?I?) to support universal screening for autism spectrum disorder (ASD) in primary care. They end their report with multiple suggestions for future research, including: 1) studies that assess the impact of false positive screening on families, and 2) studies that explore characteristics of children, families, and systems that are more and less effectively engaged in the screening, diagnosis, and treatment process. To move the Task Force from an ?I? recommendation, studies are needed that respond to the USPSTF suggestions for future research. Our current R01, which is already prospectively collecting data on a large sample of children who screen positives for ASD in primary care for 12-months, creates an opportunity ? with only a small amount of additional data collection ? to address many of the Task Force?s suggestions for future work. First, we will use these data to identify children with a false-positive ASD screen (estimate n=130) and measure benefits (e.g. frequency of alternate diagnoses, access to services) and harms (e.g. parental distress) in these families by: 1) Performing a structured chart review to identify/confirm false-positive screens; 2) Using regression and proportional hazards modeling to compare parent-reported measures (e.g., stress, social support), and systems measures (time to diagnosis) between families with false-positive and true-positive ASD screen; and 3) conducting semi-structured interviews with a subset of false-positive families to further explore experiences. Then, using Kaplan-Meier plots, Cox proportional hazards modeling, and multivariable logistic regression analyses, we will assess the impact of parent concern (reported at the time of an ASD screen) on how families progress through each stage of the diagnosis and treatment framework as proposed by the USPSFT, as well as impact on parent-reported outcomes. The goal of these investigations is to provide data needed to move the Task Force from an ?I? to a formal recommendation.

Public Health Relevance

In 2016, the US Preventative Services Task Force (USPSTF) concluded that there is insufficient evidence to support universal screening for autism spectrum disorder (ASD) in primary care. The current proposal aims to fill two of the gaps in the literature cited by the USPSTF by performing structured chart review, secondary data analysis, and qualitative interviews of patients already enrolled in a large trial of ASD screening to understand benefits and harms.

Agency
National Institute of Health (NIH)
Institute
National Institute of Mental Health (NIMH)
Type
Research Project (R01)
Project #
3R01MH104355-04S3
Application #
9615597
Study Section
Program Officer
Pintello, Denise
Project Start
2014-08-25
Project End
2019-06-30
Budget Start
2018-03-06
Budget End
2018-06-30
Support Year
4
Fiscal Year
2018
Total Cost
Indirect Cost
Name
Boston University
Department
Public Health & Prev Medicine
Type
Schools of Public Health
DUNS #
604483045
City
Boston
State
MA
Country
United States
Zip Code