The Physician’s Role in the

Development of Effective Early

Hearing Detection and Intervention

Programs

Blindness separates people from things.Deafness separates people from people.

--- Helen Keller

Improvements in Hearing Screening Equipment

Hospitals with Universal Newborn Hearing Screening Programs

0

500

1000

1500

2000

2500

3000

3500

4000

1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001

Year

Num

ber

of H

ospi

tals

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

70.0%

80.0%

90.0%

100.0%

Jan-

93

Jan-

94

Jan-

95

Jan-

96

Jan-

97

Jan-

98

Jan-

99

Jan-

00

Jan-

01

Percentage of Newborns Screened for Hearing Prior to Hosptial Discharge

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

70.0%

80.0%

90.0%

100.0%

Jan-

93

Jan-

94

Jan-

95

Jan-

96

Jan-

97

Jan-

98

Jan-

99

Jan-

00

Jan-

01

Jan-

02

Percentage of Newborns Screened for Hearing in the United States

3

For current data see:http://www.infanthearing.org/status/unhsstate.html

States with Legislative Mandates Related to Universal Newborn Hearing Screening

Status of UNHS Legislative Mandates

States with mandates

No mandate

No mandate, but statewide programs

AAP Task Force on Newborn Infant Hearing

• Endorses implementation of universal newborn hearing screening

• Defines standards for:– Screening– Tracking & Follow-up– Identification & Intervention– Program Evaluation

• Encourages AAP Chapters to provide leadership in developing statewide programs

In addition to the AAP, Universal Newborn Hearing Screening Has

Been Endorsed by:

• National Institutes of Health

• Maternal and Child Health Bureau

• Centers for Disease Control & Prevention

• Joint Committee on Infant Hearing

• American Academy of Audiology

• American Speech-Language-Hearing Association

• National Association of the Deaf

Why is Early Identification of Hearing Loss so Important?

• Hearing loss is the most frequent birth defect.

Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs

Sample Prevalence

Site Size Per 1000

Rhode Island (3/93 - 6/94) 16,395 1.71

Colorado (1/92 - 12/96) 41,976 2.56

New York (1/95 - 12/97) 69,761 1.95

Texas (1/94 - 6/97) 52,508 2.15

Hawaii (1/96 - 12/96) 9,605 4.15

New Jersey (1/93 - 12/95) 15,749 3.30

Incidence per 10,000 of Congenital Defects/Diseases

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

Why is Early Identification of Hearing Loss so Important?

• Hearing loss is the most frequent birth defect.

• Undetected hearing loss has serious negative consequences.

Reading Comprehension Scores of Hearing and Deaf Students

1.0

2.0

3.0

4.0

5.0

6.0

7.0

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.

Gra

de

Eq

uiv

alen

ts

Effects of Unilateral Hearing Loss

MathLanguage

MathLanguage

Social

MathLanguage

MathLanguage

Social

0th 10th 20th 30th 40th 50th 60th

Percentile Rank

Normal Hearing Unilateral Hearing Loss

Keller & Bundy (1980)(n = 26; age = 12 yrs)

Peterson (1981)(n = 48; age = 7.5 yrs)

Bess & Thorpe (1984)(n = 50; age = 10 yrs)

Blair, Peterson & Viehweg (1985) (n = 16; age = 7.5 yrs)

Culbertson & Gilbert (1986)(n = 50; age = 10 yrs)

Average ResultsMath = 30th percentile

Language = 25th percentileSocial = 32nd percentile

Why is Early Identification of Hearing Loss so Important?

• Hearing loss is the most frequent birth defect.

• Undetected hearing loss has serious negative consequences.

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

0.8 1.2 1.8 2.2 2.8 3.2 3.8 4.2 4.80

1

2

3

4

5

6

Identified <6 mos (n = 25)

Identified >6 mos (n = 104)

Age (yrs)

Lan

gu

age

Ag

e (y

rs)

Boys Town National Research Hospital Study of Earlier vs. Later

Moeller, M.P. (1997). Personal communication, moeller@boystown.org

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

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

Tremendous ProgressDuring the Last Decade

• Less than 30 hospitals with UNHS in 1993; compared with almost 2,500 today

• More than 2.5 million babies are screened every year prior to discharge

• 36 states have passed legislation related to newborn hearing screening

Good work,but I think we mightneed just a little more detail righthere.

Implementing Effective EHDI Programs

Then amiracleoccurs

out

Start

The Other Side of the Coin . . . .

• 1,000+ hospitals are not yet screening for hearing loss

• Almost 1.5 million babies are NOT screened every year prior to discharge

• Existing legislation is of variable quality

• Follow-up rates are often alarmingly low

• Some hospitals have unacceptably high referral rates

Status of EHDI Programs in the US:

Universal Newborn Hearing Screening

• With 2/3 all babies screened prior to discharge, newborn hearing screening is becoming the standard of care

• There are hundreds of excellent programs - - - regardless of the type of equipment or protocol used

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

Status of EHDI Programs in the US:

Tracking and Data Management

• Typically reported “lost to follow-up” rates are 40% to 60%

• 75% of states collect some data from hospitals, but only about 1/3 include identifying information --- making follow-up by state impossible

• Only 17% of states currently have any linkages with other data systems (eg, Vital Statistics, metabolic, EI, Immunizations)

Status of EHDI Programs in the US:

Audiological Diagnosis

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

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

• State coordinators estimate only 56.1% “receive diagnostic evaluations by 3 months of age

Status of EHDI Programs in the US:

Early Intervention

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

• Part C of IDEA is severely under utilized

• State Coordinators estimate:

– 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

State Coordinator’s Ratings of Obstacles to

Effective EHDI Programs Serious or Extremely Serious Obstacle

Unwillingness of third-party payersto reimburse for hearing screening 28%

Physicians don’t know enough about newbornhearing screening, diagnosis, and intervention 41%

Shortage of qualified pediatric audiologists 49%

Results of Statewide Parent Survey about Newborn Hearing Screening Program

After all hearing tests were completed, how did you feel?

Strongly Agree or Agree

total group subgroup*

Worried about my baby’s hearing 11% 24%

Confused about the results of screening tests 10% 24%

Glad hearing screening is done at this hospital 91% 70%

Confident the hearing tests were correct 91% 70%

Frustrated by how long it took to get results 13% 28%

Happy with the professional way screening was done 86% 76%

Confident about what I needed to do next 88% 56%

Subgroup consisted of parents whose baby did not pass the newborn hearing screen

What Can Physicians Do To Help?

• AAP Model Legislation

• Education

• Work with hospitals and Departments of Health

• Encourage parents to follow-up

Resources are Available to AssistNCHAM’s Implementation Guide

www.infanthearing.org

www.babyhearing.org

Appreciation is expressed to the following groups for assistance in preparing the preceding materials:

• American Academy of Pediatrics, Department of Chapter and State Affairs

• The National Center for Hearing Assessment and Management, Utah State University

• Boys Town National Research Hospital

• Maternal and Child Health Bureau

Additional information and assistance can be obtained from:

• www.infanthearing.org

• www.babyhearing.org