Download Should Newborn Hearing Screening be the Standard of Care in the

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
4000
Number of Hospitals
3500
3000
2500
2000
1500
1000
500
0
1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001
Year
Percentage of Newborns Screened for Hearing
Prior to Hosptial Discharge
100.0%
90.0%
80.0%
100.0%
70.0%
90.0%
60.0%
80.0%
70.0%
50.0%
60.0%
40.0%
50.0%
30.0%
40.0%
30.0%
20.0%
20.0%
10.0%
10.0%
Jan-02
Jan-01
Jan-00
Jan-99
Jan-98
Jan-97
Jan-96
Jan-95
Jan-94
Jan-93
0.0%
Percentage of Newborns Screened for Hearing
in the United States
For current data see:
http://www.infanthearing.org/status/unhsstate.html
3
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
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
Site
Sample
Size
Prevalence
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
40
30
30
20
5
6
10
11
12
1
2
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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.
Grade Equivalents
Reading Comprehension Scores
of Hearing and Deaf Students
10.0
9.0
8.0
7.0
6.0
5.0
4.0
3.0
2.0
1.0
Deaf
Hearing
8
9
10
11
12
13
14
15
16
17
18
Age in Years
Schildroth, A. N., & Karchmer, M. A. (1986). Deaf children in America, San Diego: College Hill Press.
Effects of Unilateral Hearing Loss
Normal Hearing
Keller & Bundy (1980)
(n = 26; age = 12 yrs)
Math
Language
Peterson (1981)
(n = 48; age = 7.5 yrs)
Math
Language
Bess & Thorpe (1984)
(n = 50; age = 10 yrs)
Social
Blair, Peterson & Viehweg (1985)
(n = 16; age = 7.5 yrs)
Math
Language
Culbertson & Gilbert (1986)
(n = 50; age = 10 yrs)
Math
Language
Social
Average Results
Math = 30th percentile
Language = 25th percentile
Social = 32nd percentile
0th
10th
20th
Unilateral Hearing Loss
30th
40th
Percentile Rank
50th
60th
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.
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.
Language Age (yrs)
6
Identified <6 mos (n = 25)
Identified >6 mos (n = 104)
5
4
3
2
1
0
0.8
1.2
1.8
2.2
2.8
3.2
3.8
Age (yrs)
Moeller, M.P. (1997).Personal communication
, [email protected]
4.2
4.8
Tremendous Progress
During 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
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.
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 payers
to reimburse for hearing screening
28%
Physicians don’t know enough about newborn
hearing 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 Assist
NCHAM’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