Date of Award

2017

Document Type

Open Access Dissertation

Department

Epidemiology and Biostatistics

Sub-Department

The Norman J. Arnold School of Public Health

First Advisor

Melinda Forthofer

Abstract

Autism spectrum disorders (ASDs) are a group of lifelong, neurodevelopmental disorders characterized by deficits in social interaction, communication, relationship development and by the presence of repetitive or stereotypical behaviors including restricted interests. Continued advances in understanding treatment outcomes and broadening access to effective treatment is critical to improving the quality of life of children with autism and their families and minimizing the cost associated with care. The overall aim of this study is to assess the effectiveness of a community-based implementation of an Early Intensive Behavioral Intervention (EIBI) treatment program through a large-sample, longitudinal secondary analysis of administrative data. Additionally, it identifies baseline characteristics that predict improvements in adaptive behaviors and language. It also assesses the impact of data collection and data management on the internal and external validity of those findings. Using historical data from the South Carolina Department of Disabilities and Special Needs (SC DDSN) Pervasive Development Disorder (PDD) Program, this retrospective cohort study analyzed 615 children, aged 3-8, who had completed two years of EIBI treatment, with treatment beginning in years 2007 through 2011. This study demonstrated statistically significant average gains in adaptive behavior, expressive and receptive language after two years of EIBI treatment. It showed that gains were achieved in each of the first two years for adaptive behaviors and expressive language while receptive language only showed gains in the first year. It showed that 40% of children experienced gains equivalent to a medium effect size in adaptive behaviors. It demonstrated that age at entry and baseline measures of adaptive behavior and language moderated gains. Lastly, it showed that missing data and incomplete records did not impact the validity of results. As more children are diagnosed with autism and treated through large, community-based programs, the administrative data collected provides a potentially rich source of research data. Given the findings, reinforced here, that only a subset of children are benefitting from EIBI treatment, larger research samples are needed to better explore the moderators of outcomes. By improving data management, data quality and data retention, large, multi-year studies can provide sufficient statistical power to better understand relationships that have a direct impact on program costs.

Rights

© 2017, John Kuntz

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