Early Hearing Detection and Intervention (EHDI) ~ Challenges and Opportunities ~

Early Hearing Detection Early Hearing Detection and Intervention (EHDI)and Intervention (EHDI)

~ ~ Challenges and Challenges and OpportunitiesOpportunities ~ ~

Why is early identification of Why is early identification of hearing loss so important?hearing loss so important?

Hearing loss occurs more frequently than any other birth disorder.

30

12 11

6 52 1

0

10

20

30

40

Hearing Loss

Cleft lip or palate

Down Syndrome

Limb defects

Spina bifida

Sickle Cell Anemia

PKU

Incidence per 10,000 of Incidence per 10,000 of Congenital Congenital

Disorders/DiseasesDisorders/Diseases

Why is early identification of Why is early identification of hearing loss so important?hearing loss so important?

Hearing occurs more frequently than any other birth disorder.

Undetected hearing loss has serious, negative consequences.

Reading Comprehension Scores Reading Comprehension Scores of Hearing and Deaf Studentsof Hearing and Deaf Students

1.0

2.0

3.0

4.0

5.0

6.0

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8.0

9.0

10.0

8 9 10 11 12 13 14 15 16 17 18

Deaf

Hearing

Age in Years

Schildroth, A. N., & Karchmer, M. A. (1986). Deaf children in America, San Diego: College Hill Press.

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Why is early identification of Why is early identification of hearing loss so important?hearing loss so important?

Hearing occurs more frequently than any other birth disorder.

Undetected hearing loss has serious negative consequences.

There are dramatic benefits associated with early identification of hearing loss.

Benefits of Early IdentificationBenefits of Early Identification

0.8 1.2 1.8 2.2 2.8 3.2 3.8 4.2 4.80

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Identified <6 mos (n = 25)

Identified >6 mos (n = 104)

Age (yrs)

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age

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Boys Town National Research Hospital Study of Earlier vs. Later

Moeller, M.P. (1997). Personal communication, [email protected]

129 deaf and hard-of-hearing children assessed 2x each year.

Assessments done by trained diagnostician as normal part of early intervention program.

Early Identification of Hearing Impairment in Infants and Young Children

March, 1993

The consensus panel concluded that all infants should be screened for hearing Impairment. . .this will be accomplished most efficiently by screening prior to discharge from the well-baby nursery. Infants who fail . . .should have a comprehensive hearing evaluation no later than 6 months of age.

NIH Consensus PanelNIH Consensus Panel

EHDI Program GoalsEHDI Program Goals

▣ All infants will be screened for hearing loss at birth or before 1 month of age.

▣ Infants not passing the screening will receive appropriate audiologic and medical evaluation before 3 months of age.

▣ Infants and their parents will be linked with a medical home and culturally competent family support.

▣ All infants with confirmed permanent hearing loss will begin receiving early intervention services before 6 months of age.

▣ Statewide data and tracking systems will be established to monitor the quality of screening services and to help ensure that children and families receive the follow-up services they need.

EHDI Program EHDI Program ComponentsComponents

▣▣ Universal Newborn Hearing ScreeningUniversal Newborn Hearing Screening

▣▣ Medical HomeMedical Home

▣▣ Diagnostic AudiologyDiagnostic Audiology

▣▣ Early InterventionEarly Intervention

▣▣ Family SupportFamily Support

▣▣ Tracking and Data ManagementTracking and Data Management

Technological advances have made it possible to conduct highly reliable physiological hearing screening of children as young as a few hours old.

▣▣ Universal Newborn Hearing ScreeningUniversal Newborn Hearing Screening –– TechnologyTechnology

AABR (Automated Auditory Brainstem Response) OAE (Otoacoustic Emissions)

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90.0%Ja

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Percentage of Newborns Screened for Hearing Prior to Discharge

▣▣ Universal Newborn Hearing ScreeningUniversal Newborn Hearing Screening

37 States Have Legislative Mandates Related to Universal Newborn Hearing Screening

States with mandates

No mandate

No mandate, but statewide programs

▣▣ Universal Newborn Hearing ScreeningUniversal Newborn Hearing Screening

▣▣ Universal Newborn Hearing ScreeningUniversal Newborn Hearing Screening - - LegislationLegislation

+ There are hundreds of excellent universal newborn hearing screening programs operating nationwide.

+ With almost 90% of all babies being screened prior to discharge, newborn hearing screening is becoming the accepted standard of care.

- Many programs are still struggling with high refer rates and poor follow-up.

▣▣ Universal Newborn Hearing ScreeningUniversal Newborn Hearing Screening

1999 2000 2001(6 mos.)

(n=43,547) (n=46,771) (n=23,307)

Inpatient Pass Rates (state average) 85.2% 85.5% 87.5%

10 most effective hospitals 92.8% 93.4% 93.7%

10 least effective hospitals 70.7% 63.4% 74.4%

Outpatient completion (state average) 70.1% 67.1% 68.3%

10 most effective hospitals 94.5% 95.9% 94.7%

10 least effective hospitals 45.3% 52.9% 58.08%

Reported Completion of Diagnostic 133 of 357 165 of 380 41 of 110*

Evaluations (state average) 37.3% 43.4% 40%

*based on only 3 months of available data

▣▣ Universal Newborn Hearing ScreeningUniversal Newborn Hearing Screening

▣ ▣ Medical HomeMedical Home

• Accessible

• Family-centered

• Comprehensive

• Continuous

• Coordinated

• Compassionate

• Culturally effective

A primary care physician provides care which is:

Parent Groups

Mental Health

Birthing Hospital

Audiology

Primary Provider

Child/Family

ENT

GeneticsEarly

Intervention Programs

3rd Party Payers

Deaf Community

Services for Hearing Loss

▣▣ Medical HomeMedical Home – – Primary Care Provider Primary Care Provider EducationEducation

▣▣ Medical HomeMedical Home – – Strategies for Strategies for Improving Improving Follow-upFollow-up

▣▣ Medical Home – Medical Home – Follow-upFollow-up

▣▣ Diagnostic AudiologyDiagnostic Audiology

+ Equipment and techniques for diagnosis of hearing loss in infants continues to improve

+ States are developing guidelines to identify audiologists who can appropriately serve infants and young children

▣▣ Diagnostic AudiologyDiagnostic Audiology

- Severe shortages in experienced pediatric audiologists delays confirmation of hearing loss

- State EHDI Coordinators estimate only 56.1% receive diagnostic evaluations by 3 months of age

▣▣ Early InterventionEarly Intervention

+ Some families are experiencing the benefits of early identification and intervention

▣▣ Early InterventionEarly Intervention

- Current system designed to serve infants with bilateral severe/profound losses---but, majority of those identified have mild, moderate, and unilateral losses

- Only 53% of infants with hearing loss are enrolled in EI programs before 6 months of age

- Only 31% of states have adequate range of choices for EI programs

▣▣ Family SupportFamily Support

• (grief) Reactions to

unexpected diagnosis• (pressure) Urgency of

communication decisions

Common emotions of families upon learning that their child has a hearing loss:

▣▣ Family SupportFamily Support

• (confusion) Search for

experienced professionals• (isolation) Availability of

services and support

Common emotions of families upon learning that their child has a hearing loss:

▣▣ EHDI Data Management, Tracking EHDI Data Management, Tracking and and Follow-upFollow-up

- 33% of submissions have no identifying data --making follow-up by state EHDI staff impossible

- Only 17% of states currently have any kind of linkage with other data systems (eg, Vital Statistics, Heelstick, EI, Immunizations)

+ 75% of states receive screening data from some hospitals -- information submitted for 62% of births in 2001

▣▣ Where do we go from here?Where do we go from here?