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The New EHDI Screening and Follow-up Survey

The New EHDI Screening and Follow-up Survey. John Eichwald, M.A., FAAA Marcus Gaffney, MPH. EHDI Screening and Follow-Up Survey. The collection and reporting of consistent and comparable data across state and territorial EHDI jurisdictions is compromised by many factors including:

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The New EHDI Screening and Follow-up Survey

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  1. The New EHDI Screening and Follow-up Survey John Eichwald, M.A., FAAA Marcus Gaffney, MPH

  2. EHDI Screening and Follow-Up Survey • The collection and reporting of consistent and comparable data across state and territorial EHDI jurisdictions is compromised by many factors including: • 32 jurisdictions have some type of EHDI legislation • some jurisdictions only recommend or do not require that all newborns be screened • some jurisdictions do not mandate reporting to the state/territory program

  3. EHDI Screening and Follow-Up Survey • 2000 JCIH position statement recommendation: • “development of uniform state registries and national information databases incorporating standardized methodology, reporting, and system evaluation” • “standardize data definitions to ensure the value of state registries and federal data sets and to prevent misleading or unreliable information”

  4. EHDI Screening and Follow-Up Survey • Under Congressional authority the CDC-EHDI program is directed to: • “develop standardized procedures for data management to ensure quality monitoring of newborn and infant hearing loss screening, evaluation, and intervention programs and systems”

  5. EHDI Screening and Follow-Up Survey • Hospital protocols may vary considerably even within a jurisdiction: • some hospitals employ a single stage screening (OAE or ABR) • some hospitals employ a two stage screening (OAE plus ABR) • some hospitals employ an inpatient/outpatient screening protocol

  6. EHDI Screening and Follow-Up Survey • In October 2006 the Federal Office of Management and Budget (OMB) approved a new EHDI Survey • This survey replaces the Directors of Speech and Hearing Program in State Health and Welfare Agencies (DSHPSHWA) survey which was used to collect EHDI information from 1999 through 2004

  7. EHDI Screening and Follow-Up Survey • The purpose of the CDC-EHDI survey is to collect and report calendar year aggregate data and will be used as the official source to help assess progress towards: • National “1-3-6” EHDI Goals • Healthy People 2010 Objective 28−11 • CDC PART1 and GPRA2 OMB performance measures Program Assessment Rating Tool1 Government Performance Results Act2

  8. EHDI Screening and Follow-Up Survey • Designed to collection information in a manner that provides more accurate, reliable, and consistent reporting among the state and territorial EHDI jurisdictions • Differs from how data was reported using the DSHPSHWA survey

  9. EHDI Screening and Follow-Up Survey • Both CDC-EHDI and DSHPSHWA surveys were designed to report screening, diagnosis, and intervention data • Both surveys use the DSHPSHWA classification for degree of hearing loss • Both surveys are voluntary • CDC-EHDI survey requests more detailed information

  10. EHDI Screening and Follow-Up Survey • DSHPSHWA survey was based on 9 core data items developed by a 1998 Task Force • CDC-EHDI survey compatible with the CDC-EHDI Data Committee recommendations • developed in collaboration with DSHPSHWA and other partners • several states provided feedback

  11. EHDI Screening and Follow-Up Survey • Requests to fill out DSHPSHWA survey were conducted in the Fall following the calendar year • CDC-EHDI survey is to be completed in January, one year after the calendar year

  12. EHDI Screening and Follow-Up Survey • DSHPSHWA survey was paper based • single page • entered manually into a database • CDC-EHDI survey is web-based and submitted electronically • 3 sections (1-3-6, type/severity, demographics) • automatic calculations • built-in error checks

  13. EHDI Screening and Follow-Up Survey • DSHPSHWA survey used actual or estimated number of live births • CDC-EHDI survey uses total occurrent births reported by the jurisdictional Vital Records Office

  14. EHDI Screening and Follow-Up Survey • DSHPSHWA survey collected information on legislation and hospital reporting • CDC-EHDI survey only requests “1-3-6” information • definitions are more restrictive • includes more demographic information

  15. EHDI Screening and Follow-Up Survey • DSHPSHWA survey requested number of newborns who were screened for hearing before hospital discharge • still to be reported for MCHB National Performance Measure #12 • includes infants referred for outpatient screening, whether completed or not • CDC-EHDI survey requests data for the final hearing screening disposition

  16. DSHPSHWA Survey (circa 2000)

  17. CDC-EHDI Survey

  18. DSHPSHWA Survey (circa 2004)

  19. CDC-EHDI Survey

  20. CDC-EHDI Survey

  21. DSHPSHWA Survey (circa 2004)

  22. CDC-EHDI Survey

  23. DSHPSHWA Survey (circa 2004)

  24. CDC-EHDI Survey

  25. CDC-EHDI Survey

  26. CDC-EHDI Survey

  27. EHDI Screening and Follow-Up Survey The purpose of the CDC-EHDI survey is to report our progress towards assuring all infants and children with hearing loss are identified and receive intervention as soon as possible.

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