Craig A Mason1, Marcus Gaffney, Denise R Green, Scott D Grosse. 1. Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, 1600 Clifton Road, Mailstop E-88, Atlanta, GA 30333, USA.
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.
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.
Authors: Joanne M Nguyen; Krista J Qualmann; Rebecca Okashah; AmySue Reilly; Mikhail F Alexeyev; Dennis J Campbell Journal: Am J Med Genet C Semin Med Genet Date: 2015-08-03 Impact factor: 3.908