Should Newborn Hearing Screening be the Standard of Care in the United States

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The Physicians Role in the Development of
Effective Early Hearing Detection and
Intervention Programs
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Blindness separates people from things. Deafness
separates people from people. --- Helen Keller
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Improvements in Hearing Screening Equipment
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Percentage of Newborns Screened for Hearing in
the United States
For current data see http//www.infanthearing.or
g/status/unhsstate.html
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States with Legislative Mandates Related to
Universal Newborn Hearing Screening
Status of UNHS Legislative Mandates
States with mandates
No mandate, but statewide programs
No mandate
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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

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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

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Why is Early Identification of Hearing Loss so
Important?

• Hearing loss is the most frequent birth defect.

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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

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Incidence per 10,000 of Congenital
Defects/Diseases
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Why is Early Identification of Hearing Loss so
Important?

• Hearing loss is the most frequent birth defect.
• Undetected hearing loss has serious negative
  consequences.

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Reading Comprehension Scores of Hearing and Deaf
Students
Grade Equivalents
Age in Years
Schildroth, A. N., Karchmer, M. A. (1986). Deaf
children in America, San Diego College Hill
Press.
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Effects of Unilateral Hearing Loss
Normal Hearing
Unilateral Hearing Loss
Math
Keller Bundy (1980)
(n 26 age 12 yrs)
Language
Math
Peterson (1981)
(n 48 age 7.5 yrs)
Language
Social
Bess Thorpe (1984)
(n 50 age 10 yrs)
Math
Blair, Peterson Viehweg (1985)
Language
(n 16 age 7.5 yrs)
Math
Culbertson Gilbert (1986)
Language
(n 50 age 10 yrs)
Social
Average Results
0th
10th
20th
30th
40th
50th
60th
Math 30th percentile
Percentile Rank
Language 25th percentile
Social 32nd percentile
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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.

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Boys Town National Research Hospital Study of
Earlier vs. Later
129 deaf and hard-of-hearing children assessed 2x
each year.
Assessments done by trained diagnostician as
normal part of early intervention program.
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Identified lt6 mos (n 25)
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Identified gt6 mos (n 104)
4
3
Language Age (yrs)
2
1
0
0.8
1.2
1.8
2.2
2.8
3.2
3.8
4.2
4.8
Age (yrs)
Moeller, M.P. (1997).
Personal communication
, moeller_at_boystown.org
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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

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Implementing Effective EHDI Programs
out
Then a
miracle
occurs
Start
Good work,
but I think we might
need just a little
more detail right here.
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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

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Status of EHDI Programs in the USUniversal
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

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Status of EHDI Programs in the USTracking 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)

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Status of EHDI Programs in the USAudiological
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

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Status of EHDI Programs in the USEarly
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

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State Coordinators Ratings of Obstacles to
Effective EHDI Programs


Serious or Extremely

Serious
Obstacle Unwillingness of third-party payers to
reimburse for hearing screening
28 Physicians dont know
enough about newborn hearing screening,
diagnosis, and intervention
41 Shortage of qualified pediatric
audiologists 49
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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 babys
hearing 11 24
Confused about the results of screening
tests 10 24 Glad hearing
screening is done at this hospital 91 70 Confi
dent 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
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What Can Physicians Do To Help?

• AAP Model Legislation
• Education
• Work with hospitals and Departments of Health
• Encourage parents to follow-up

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Resources are Available to Assist
NCHAMs Implementation Guide
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www.infanthearing.org
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www.babyhearing.org
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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