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(Aurt-SDAR) Assessing and Improving Health Care Transition Services for Youth with Autism Spectrum Disorder

Abstract

Background: Eighty percent of individuals diagnosed with autism are children, signifying an impending "tsunami" of youth with ASD (YASD) transitioning into adulthood. Over half of people with ASD have co-occurring physical and mental conditions. The combination of developmental disability and comorbid conditions increases dependence on the health care system making help transitioning to adult care (Health Care Transition (HCT) services) critical. Objective: Building on our previous work, this project will develop and validate a measure of HCT services within a nationally-representative survey and utilize this measure to examine access to HCT services among YASD, YSCHN, and non-YSHCN. Specific Aims and Hypothesis: Goal 1: Develop a Health Care Transition measure for YASD, youth with other special health care needs (YSHCN) and youth without other special health care needs (non-YSCHN). Goal 2: Evaluate the psychometric properties of the HCT measure utilizing data from the 2016, 2017, and 2018 National Survey of Children's Health. Goal 3a: Compare access to HCT services between the populations of interest (1. YASD, YSCHN, and non-YSHCN, 2. Subgroups of YASD). Hypothesis 3a.1: YASD will have significantly lower levels of HCT access than YSHCN and non-YSHCN. Hypothesis 3a.2: YASD who are racial and ethnic minorities, females, and families with low socioeconomic status will have lower levels of HCT services compared to their Caucasian, male, and high socioeconomic status counterparts. Goal 3b: Identify factors associated with access to HCT for YASD and historically underserved subgroups of YASD Hypothesis 3b.1: Severity of ASD symptoms, intellectual disability, insurance status, and quality of care indicators will be associated with access to HCT services. Hypothesis 3b.2: Factors associated with access to HCT will be consistent within the general YASD and underserved populations. Study Design: In Goal 1, Exploratory Factor Analysis procedures assess measurement fit of the current HCT indictor and all 13 transition-related variables within the National Survey of Children's Health (NSCH). Within Goal 2, the research team will examine the validity of the strongest, best fitting HCT measurement model identified in Goal 1 within three-years of the NSCH. In Goal 3a, we will examine access to HCT services between YASD, YSCHN, and non-YSHCN and within YASD subgroups utilizing univariate and multivariate tests. In Goal 3b we will identify factors associated with HCT for YASD and subgroups of YASD. This project will have a significant impact on the field of ASD research by developing a new and validated measure of HCT service access and filling a void in the research. In the shortterm, this project will improve our understanding of HCT accessibility for YASD and all youth particularly those historically underserved. In the long-term, this project will improve clinical care, health care service delivery, and young adults' independence by identifying potential pathways for effective HCT service delivery. Youth and young adults will be more prepared to transfer to an adult care model and adult life if they have personalized HCT services.

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