Measures of Follow-Up in Early Hearing Detection and Intervention Programs: A Need for Standardization

Abstract

Purpose To demonstrate the need for standardized data definitions and reporting for early hearing detection and intervention (EHDI) programs collecting information on newborn hearing screening and follow-up, and types of information best collected in a standardized manner. Method A hypothetical birth cohort was used to show the potential effects of nonstandardized definitions and data classifications on rates of hearing screening, audiologic follow-up, and hearing loss. Results The true screening rate in this cohort was 92.4%. The calculated rate was between 90.0% and 96.5%, depending on the measure used. Among children documented as screened and referred for follow-up, 61.0% received this testing. Only 49.0% were documented to have been tested. Despite a true prevalence of 3.7 per 1,000 births, only 1.5 per 1,000 children were documented with a hearing loss. Conclusion Ensuring that children receive recommended follow-up is challenging. Without complete reporting by audiologists to EHDI programs, accurate calculation of performance measures is impossible. Lack of documentation can lead to the overstatement of “loss to follow-up.” Also, standardization of measures is essential for programs to evaluate how many children receive recommended services and assess progress toward national goals. A new survey has been implemented to collect more detailed and standardized information about recommended services.