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

1
The Status of Early Hearing Detection and
Intervention in the United States
Karl R. White, PhD National Center for Hearing
Assessment and Management Utah State
University www.infanthearing.org
2
Number of Hospitals Doing Universal Newborn
Hearing Screening
Number of Programs
3
Why is Implementation of Newborn
Hearing Screening Accelerating?
Improved Screening
Techniques/Equipment
4
Why is Implementation of Newborn
Hearing Screening Accelerating?
Improved Screening
Techniques/Equipment
Acceptance by
Policy Makers
5
Endorsements for Universal Newborn Hearing
Screening

• National Institutes of Health
• American Academy of Pediatrics
• 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

6
Why is Implementation of Newborn
Hearing Screening Accelerating?
Improved Screening
Techniques/Equipment
Increased Number of
Acceptance by
Successful Programs
Policy Makers
7
Why is Implementation of Newborn
Hearing Screening Accelerating?
Improved Screening
Techniques/Equipment
Acceptance by
Increased Number of
Policy Makers
Successful Programs
Public
Awareness/Demand
8
Blindness separates people from things. Deafness
separates people from people. --- Helen Keller
9
Why is Early Identification of Hearing Loss so
Important?

• Hearing loss is the most frequent birth defect.

10
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

11
Incidence per 10,000 of Congenital
Defects/Diseases
12
Why is Early Identification of Hearing Loss so
Important?

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

13
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.
14
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
15
Effects of Mild Fluctuating Conductive Hearing
Loss
Teele, et al., 1990
194 children followed prospectively from 0-7
years.
)
Days child had otitis media between 0-3 years
assessed during normal visits to physician.
)
Data on intellectual ability, school achievement,
and language competency individually
)
measured at 7 years by "blind" diagnosticians.
Results for children with less than 30 days OME
were compared to children with more than
)
130 days adjusted for confounding variables.

Effect Size for
Outcome Measure
Less vs. More OME
WISC-R Full Scale
.62
Metropolitan Achievement Test
Math
.48
Reading
.37
Goldman Fristoe Articulation
.43
Teele, D.W., Klein, J.O., Chase, C., Menyuk, P.,
Rosner, B.A., and the Greater Boston Otitis media
Study Group (1990).
Otitis media in infancy and intellectual
ability, school achievement, speech, and language
at age 7 years.
The Journal


of Infectious Diseases
,
162
, 685-694.
16
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.

17
Yoshinaga-Itano, et al., 1996
Compared language abilities of hearing-impaired
children identified
6
before 6 months of age (n 46) with similar
children identified after 6
months of age (n 63).
All children had bilateral hearing loss ranging
from mild to profound,
6
and normally-hearing parents.
Language abilities measured by parent report
using the Minnesota
6
Child Development Inventory (expressive and
comprehension scales)
and the MacArthur Communicative Developmental
Inventories
(vocabulary).
Cross-sectional assessment with children
categorized in 4 different
6
age groups.
Yoshinaga-Itano, C., Sedey, A., Apuzzo, M.,
Carey, A., Day, D., Coulter, D. (July 1996).
The effect of early


identification on the development of deaf and
hard-of-hearing infants and toddlers
. Paper presented at the
Joint Committee on Infant Hearing Meeting,
Austin, TX.
18
Expressive Language Scores for Hearing Impaired
Children Identified Before and After 6 Months of
Age
35
30
25
Language Age in Months
20
15
10
Identified BEFORE 6 Months
5
Identified AFTER 6 Months
0
13-18 mos
19-24 mos
25-30 mos
31-36 mos
(n 15/8)
(n 12/16)
(n 11/20)
(n 8/19)
Chronological Age in Months
19
Vocabulary Size for Hearing Impaired Children
Identified Before and After 6 Months of Age
300
250
200
Vocabulary Size
150
100
Identified BEFORE 6 Months
50
Identified AFTER 6 Months
0
13-18 mos
19-24 mos
25-30 mos
31-36 mos
(n 15/8)
(n 12/16)
(n 11/20)
(n 8/19)
Chronological Age in Months
20
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.
)
6
Identified lt6 mos (n 25)
5
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
21
Tremendous ProgressDuring the Last Decade

• Less than 30 hospitals with UNHS in 1993
  compared with more than 2000 today
• More than 2 million babies are screened every
  year prior to discharge
• 34 states have passed legislation related to
  newborn hearing screening

22
The Other Side of the Coin . . . .

• 2,200 hospitals are not yet screening for hearing
  loss
• Almost 2 million babies are NOT screened every
  year prior to discharge
• Existing legislation is of variable quality
• Only 9 states (accounting for 7 of the births)
  have implemented reasonable statewide programs
• Follow-up rates are often alarmingly low
• Some hospitals have unacceptably high referral
  rates

23
Status of EHDI Programs in the United States

• Universal Newborn Hearing Screening

24
Universal Newborn Hearing Screening

• With over half of all babies are screened prior
  to discharge, has newborn hearing screening
  become 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

25
Status of EHDI Programs in the United States

• Universal Newborn Hearing Screening
• Effective Tracking and Follow-up as a part of the
  Public Health System

26
Rate Per 1000 of Permanent Childhood Hearing Loss
in UNHS Programs

• Sample Prevalence of Refers
• Site Size Per 1000 with
  Diagnosis
• Rhode Island (3/93 - 6/94) 16,395 1.71
  42
• Colorado (1/92 - 12/96) 41,976 2.56
  48
• New York (1/96 - 12/96) 27,938 1.65
  67
• Utah (7/93 - 12/94) 4,012 2.99
  73
• Hawaii (1/96 - 12/96) 9,605 4.15
  98

27
Tracking "Refers" is a Major Challenge
(continued)










Initial
Rescreen
Births
Screened Refer Rescreen
Refer
Rhode Island
53,121
52,659

5,397

4,575

677

(1/93 - 12/96)

(99)

(10)

(85)

(1.3)

Hawaii
10,584
9,605

1,204

991

121
(1/96 - 12/96)

(91)

(12)

(82)

(1.3)

New York
28,951
27,938

1,953

1,040

245

(1/96-12/96)

(96.5)

(7)

(53)

(0.8)


28
Status of EHDI Programs in the United States

• Universal Newborn Hearing Screening
• Effective Tracking and Follow-up as a part of the
  Public Health System
• Appropriate and Timely Diagnosis of the Hearing
  Loss

29
Audiological Diagnosis

• Equipment and techniques for diagnosis of hearing
  loss in infants continues to improve
• Severe shortages in experienced pediatric
  audiologists are delaying confirmation of hearing
  loss
• Most states are having serious problems linking
  babies with diagnostic follow-up

30
Status of EHDI Programs in the United States

• Universal Newborn Hearing Screening
• Effective Tracking and Follow-up as a part of the
  Public Health System
• Appropriate and Timely Diagnosis of the Hearing
  Loss
• Prompt Enrollment in Appropriate Early
  Intervention

31
Early Intervention

• Part C of IDEA is an under used resource
• Services are generally quite good for babies with
  severe profound bilateral loss, but less adequate
  for babies with more moderate loss

32
Key Concepts for Early Intervention

• Transactional
• Developmental
• Family Focused
• Holistic
• Transdisciplinary

33
Communication Choices

• American Sign Language
• Total Communication
• Auditory Verbal
• Auditory-Oral
• Cued Speech

34
Technology Decisions

• Audiological Evaluation
• Hearing Aids
• Cochlear Implant
• Assistive Devices

35
Status of EHDI Programs in the United States

• Universal Newborn Hearing Screening
• Effective Tracking and Follow-up as a part of the
  Public Health System
• Appropriate and Timely Diagnosis of the Hearing
  Loss
• Prompt Enrollment in Appropriate Early
  Intervention
• A Medical Home for all Newborns

36
What Is a Medical Home?

• A primary care physician provides care which is
• Accessible
• Family-centered
• Comprehensive
• Continuous
• Coordinated
• Compassionate
• Culturally effective

37
EHDI and the Medical Home
Birthing Hospital
Audiology
Parent Groups Mental Health
Primary Provider
Child/Family
ENT
3rd Party Payers
Deaf Community
Early Intervention Programs
Genetics
Services for Hearing Loss
38
Status of EHDI Programs in the United States

• Universal Newborn Hearing Screening
• Effective Tracking and Follow-up as a part of the
  Public Health System
• Appropriate and Timely Diagnosis of the Hearing
  Loss
• Prompt Enrollment in Appropriate Early
  Intervention
• A Medical Home for all Newborns
• Culturally Competent Family Support

39
What do families want to know when a child is
diagnosed with hearing loss.

• What do we do next?
• When must we take action?
• Where do we get more information?
• How do we decide?
• Who will help us?
• Why do we need early intervention?

40
Emotions of Families with a Deaf orHard of
Hearing Baby

• (grief) Reactions to Unexpected Diagnosis
• (pressure) Urgency of Communication Decisions
  Search
• (confusion) Search for Experienced Professionals
• (isolation) Availability of Services and Support

41
Status of EHDI Programs in the United States

• Universal Newborn Hearing Screening
• Effective Tracking and Follow-up as a part of the
  Public Health System
• Appropriate and Timely Diagnosis of the Hearing
  Loss
• Prompt Enrollment in Appropriate Early
  Intervention
• A Medical Home for all Newborns
• Culturally Competent Family Support
• Elimination of geographic and financial barriers
  to service access