WIP 98 - Inclusion of participants with limited English proficiency in autism research

Poster Number: WIP 98
Publication Number: WIP 98.725

Background: Disparities exist in quality of care and healthcare outcomes for patients with autism who have limited English proficiency (LEP). A critical step in improving equity for LEP patients with autism is ensuring inclusion in research; however, there are no standard LEP inclusion guidelines for research and no recommended practices for translation and interpretation services. Understanding current LEP inclusion in autism research can help facilitate institutional- and policy-level changes that improve representation in autism research and access to interventions. While the prevalence of autism has been increasing in the United States, we hypothesize that representation of LEP patients in autism research has not followed the same trend.

Objective: To determine how frequently US research studies about autism include LEP participants, which languages are included, and how research teams communicate with LEP participants.

Design/Methods: All human research studies (n=3445) published in the journals "Autism", "Autism Research", "Journal of Autism and Developmental Disabilities", and "Research in Autism Spectrum Disorders" from 2013-2023 were extracted from PubMed and Scopus databases. From these studies, we are including for review those that are about autism, recruited subjects/used subject data from US participants, and are original research studies. Studies meeting these inclusion criteria are then evaluated using Covidence systematic review software to determine whether they document enrollment of LEP participants, which languages are included, and methods of oral and written communication with LEP participants. Using these data, we will examine if inclusion of LEP participants is documented, what proportion of studies include LEP participants, how LEP subjects are accommodated (e.g., translation, consenting, bilingual study team members), and if inclusion has changed over time. Our study has been deemed non-human subjects research. Data collection is in process with plans to complete screening and review of all papers by early 2024 and complete analysis by March 2024.