(( Despite significant advances in the early detection of autism spectrum disorders (ASD), racial and ethnic disparities persist in rates and age of detection among children from low socioeconomic status (1). With support from NIMH (R01MH104400), our team developed and is now evaluating the effectiveness of a multi-stage screening protocol to address these health disparities among at-risk toddlers in an underserved region of Greater Boston Massachusetts (MA) referred to as the ?Circle of Promise,? where 98% of children come from racial/ethnic minority populations and 47% are English language learners. Our intervention approach involves partnering with early intervention (EI) agencies to provide targeted multi-stage screening to at-risk toddlers enrolled in Part C EI, the publicly-funded programs to which pediatricians typically refer children experiencing delays in language and other areas of development. In this project, we leverage the experiences of parents, providers and pediatricians in this multi-stage screening protocol to assess potential risks and benefits associated with ASD screening, detection, and treatment, as well as investigate challenges to retention over time among underserved communities. Expanding upon data collected from 21 parents engaged in the ASD multi-stage screening protocol, 22 EI service providers, and over 40 hours of observational data, we first propose to conduct an additional semi-structured interviews with 30 parents who were more likely to experience harms and risks associated with ASD screening (e.g., ?false positives,? loss-to-follow-up), EI service providers with extensive experience implementing the protocol (n=30), and pediatricians whose patients were diagnosed with ASD through this protocol (n=20). Employing a modified grounded theory approach, we will analyze these data and develop a conceptual framework of the risks and benefits associated with ASD screening, detection, and treatment. Given the diverse sample of parents engaged in this process, our findings will be especially germane to building new theoretic understanding of risks and benefits associated with growing disparities in early detection and treatment. Based on findings, we will then conduct a systematic evidence review to identify measures that operationalize identified risks and benefits and disseminate findings through a web-based measures clearinghouse. The clearinghouse will be made available to the research community, including the ASD Pediatrics Network, and include user surveys to facilitate a process of continuous quality improvement. !
Project(Narrative(( The U.S. Preventive Services Task Force has highlighted the need for studies to assess the harms and benefits associated with ASD screening, detection, and treatment in early childhood, especially among underserved populations. Leveraging the engagement of young children and their families and early intervention providers in a multi-stage screening protocol within an underserved community, this study seeks to build new understandings of the harms and benefits associated with early ASD screening, detection, and treatment. Our proposed supplement will ultimately provide a comprehensive theoretic framework of the harms and benefits and a clearinghouse of congruent measures to assist future NIH- funded researchers, including the ASD Pediatrics Network, to maximize opportunities for comprehensive and rigorous measurement approaches to assess harms and benefits associated with ASD screening, detection, and treatment. !
Showing the most recent 10 out of 12 publications
