TM Centers for Disease Control and Prevention National Center on Birth Defects and Developmental...

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Centers for Disease Control and Prevention

National Center on Birth Defectsand Developmental Disabilities

Centers for Disease Control and Prevention

National Center on Birth Defectsand Developmental Disabilities

The New EHDI Screening and Follow-up Survey

The New EHDI Screening and Follow-up Survey

John Eichwald, M.A., FAAA

Marcus Gaffney, MPH

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• 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

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey

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• 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”

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey

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• 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”

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey

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• 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

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey

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• 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

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey

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• 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

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey

Program Assessment Rating Tool1

Government Performance Results Act2

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• 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

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey

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• 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

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey

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• 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

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey

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• 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

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey

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• 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

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey

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• DSHPSHWA survey used actual or estimated number of live births

• CDC-EHDI survey uses total occurrent births reported by the jurisdictional Vital Records Office

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey

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• 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

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey

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• 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

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey

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DSHPSHWA SurveyDSHPSHWA Survey

(circa 2000)

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CDC-EHDI SurveyCDC-EHDI Survey

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DSHPSHWA SurveyDSHPSHWA Survey

(circa 2004)

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CDC-EHDI SurveyCDC-EHDI Survey

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CDC-EHDI SurveyCDC-EHDI Survey

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DSHPSHWA SurveyDSHPSHWA Survey

(circa 2004)

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CDC-EHDI SurveyCDC-EHDI Survey

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DSHPSHWA SurveyDSHPSHWA Survey

(circa 2004)

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CDC-EHDI SurveyCDC-EHDI Survey

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CDC-EHDI SurveyCDC-EHDI Survey

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CDC-EHDI SurveyCDC-EHDI Survey

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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.

EHDI Screening and Follow-Up SurveyEHDI Screening and Follow-Up Survey