A Systematic Review of Research Involving ASD Screening Tools: A Roadmap for Modelling Progress from Basic Research to Population Impact

Background: Concerns about ASD’s prevalence and delays in diagnosis mobilized $2.5 billion in research funding in the United States between 2008 and 2015. Yet recent reports indicate persistent and significant gaps in timely and accurate identification. We recently reviewed all projects funded through the National Institutes of Health from 2008 to 2013 focused on ASD identification. Only 9 projects (or 1% of total NIH funding for ASD research) focused on improving ASD identification among community providers. Do these apparent gaps in research funding in the United States reflect broader gaps in translating research into community practice? To understand these gaps, we have piloted a research roadmap for improved ASD identification that tracks progress from knowledge gained through basic research to demonstrated impact across large, diverse populations. Other presentations submitted to IMFAR demonstrate patterns of funding over time that are consistent with the roadmap.

Objectives: To further define a research roadmap for achieving large scale improvements in ASD identification, by evaluating its utility in capturing publication gaps and trends over time for one specific body of work: clinical and implementation research on ASD screening using the Checklist for Autism in Toddlers (CHAT) and its variants.

Methods: We defined the major categories of the roadmap (Basic and Applied Research) and sequentially-related subcategories of the latter (Clinical, Implementation, and Other Applied Research). We further defined each subcategory with respect to specific sub-types, objectives, and milestones for research. We conducted electronic database searches for all peer-reviewed publications involving the the development, validation, or implementation of the CHAT or its variants. In Phase 1, we reviewed abstracts to eliminate articles that are not relevant, and assigned those remaining to subcategories of the roadmap. Full-text reviews currently underway in Phase II will involve more detailed coding of sub-types, objectives, and milestones.

Results: An initial review of almost 200 abstracts from 1992 to 2018 yielded more than 110 relevant research studies involving the CHAT and its variants. More than 80% were classified in Phase I as clinical research studies (e.g., exploring the tool’s usefulness with different populations, evaluating a new variant or translation, and so on). Fewer than 20% were classified as implementation or other applied research, with most assessing potential barriers rather than seeking to overcome them. Few studies explored the tool’s utility outside of medical settings, or its potential to improve rates of timely and accurate ASD identification across a designated region. Trends over time in publications of clinical and implementation research are consistent with the roadmap.

Conclusions: A systematic review of 25 years of clinical and implementation research involving the CHAT and its variants demonstrates the utility of the research roadmap in charting progress. The relative lack of emphasis on implementation research - especially research addressing implementation barriers - may begin to explain persistent gaps in timely and accurate identification, and help to reshape research priorities.