the physicians role in the development of effective early hearing detection and intervention...
TRANSCRIPT
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The Physician’s 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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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
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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
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Percentage of Newborns Screened for Hearing in the United States
3
For current data see:http://www.infanthearing.org/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
No mandate, but statewide programs
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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
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
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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
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
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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
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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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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, [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.
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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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Good work,but I think we mightneed just a little more detail righthere.
Implementing Effective EHDI Programs
Then amiracleoccurs
out
Start
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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 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
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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)
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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
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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
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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%
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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 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
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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 AssistNCHAM’s 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