The moderating role of sociodemographic determinants of health on longitudinal outcomes from the Carolina Autism Transition Study.

Transition to adulthood is a critical period for persons living with autism spectrum disorder (ASD) as many support services end between ages 16-21 with limited services available for adults with ASD particularly those without intellectual disability (ID). Autistic adults are often reported to be underemployed have minimal independence in daily living activities and at high risk for social disengagement. It is also well established that sociodemographic determinants of health (SDOH) impact health functioning and quality of life. However little is known about how these factors may interact to impact young adults who already face unique challenges due to ASD.

Goals and objectives:

By leveraging readily available data sources we will examine the moderating effects of SDOH on 1) service access and utilization patterns and 2) longitudinal adverse outcomes contrasting ASD and/or ID comparison groups with a focus on identifying disparate trends among systemically disadvantaged and underrepresented communities; and 3) construct an empirically derived SDOH index based on a weighted mixture of individual- family- and area-level measures via a novel robust regression approach and explore its utility in predicting longitudinal outcome inequalities.

Proposed data sets and target populations:

This study will utilize Carolina Autism Transition Study (CATS) databases with ASD and/or ID participants identified via South Carolina Autism and Developmental Disabilities Monitoring (SC ADDM) Network. Data were subsequently linked with 12 state and private health and human service databases by the SC integrated data system capturing encounter-level data from 2000-2015. Outcomes include medical insurance and health care interventions law enforcement and social services contacts educational services and more. CATS comprise a large diverse (30% female 49% black 42% rural) cohort of individuals (606 ASD+/-ID; 1271 ID without ASD) ranging in age from 2-8 in 2000 to 17-23 by 2015. For this study CATS data will be linked with public multi-dimensional socioeconomic census-level data from the American Community Survey Food Access Research Atlas Area Deprivation Index and Social Vulnerability Index to quantify the complex effects of SDOH on long-term outcomes in individuals with ASD and/or ID.

Products:

Our team is committed to communicating results for real world clinical application to impact transition outcomes in ASD. We will disseminate findings to 3 distinct stakeholders: 1) scientific community through multiple scientific peer reviewed publications and presentations; 2) clinical community via webinars and in-person presentations; and 3) families by means of community reports and webinars through organizations focused on supporting adults with ASD consistent with our prior dissemination efforts. A community advisory board of racially and ethnically diverse autistic adults from SC will be convened to provide feedback on the outcome measures interpretations and communications of results.

Evaluation:

The interprofessional study team has extensive experience in analyzing and interpreting results from these data. Study progress will be evaluated across 3 phases: data acquisition/cleaning model building/analytics and post-study/dissemination phase. The CATS outcomes databases have already undergone an extensive data cleaning process; thus supporting the feasibility of successfully completing this study within the proposed timeline.