Identifying reduced hearing in children who have developmental disabilities: Insights for inclusive research practices with electronic health records

INTRODUCTION: Recent advancements in big data analytics and the formation of large-scale clinical data repositories provide a unique opportunity to determine the current state of pediatric hearing health care for children who have developmental disabilities. Before answering unresolved questions about diagnostic practice, it is paramount to determine a standard and reliable method for identifying children who have reduced hearing because clinical management is affected by hearing status. The purpose of this study was to compare 5 different methods for identifying cases of reduced hearing from pure-tone thresholds based on developmental disability status. METHODS: Using retrospective clinical data from 100,960 children (0–18 years), hearing status was determined for a total of 226,580 encounters from three clinical sites. 9% of the children had a diagnosis of intellectual disability, autism spectrum disorder, Down syndrome, or cerebral palsy. RESULTS: Results revealed that encounters from children who have developmental disabilities were more likely to have insufficient data to allow hearing status to be determined. Moreover, methods with higher data demands (i.e., number of thresholds and ear-specific thresholds) resulted in fewer classifiable encounters. The average child age when hearing status was classified for the first time was older for children who have developmental disabilities than for children in the comparison group. Allowing thresholds to build up over multiple test sessions did result in more children who have developmental disabilities being classified than for single-encounter methods, but a meaningful decrease in child age at the time of classification was not seen for this strategy. Compared to the comparison group, children who have developmental disabilities were more likely to have reduced hearing that was stable over time, yet their hearing status was determined at older ages. DISCUSSION: Results provide key guidance to researchers for how to determine hearing status in children for big data applications using electronic health records. Furthermore, several assessment disparities are spotlighted for children who have developmental disabilities that warrant further investigation.