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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
Number of Hospitals Doing Universal Newborn Hearing Screening
3 3 11 26 60 120 243462
712934
1816
2384
0200400600800
1000120014001600180020002200240026002800
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Percentage of Births Screened for Hearing Before Discharge
3
1525
65 67
010
2030
4050
6070
8090
100
Jan
-93
Jul-9
3
Jan
-94
Jul-9
4
Jan
-95
Jul-9
5
Jan
-96
Jul-9
6
Jan
-97
Jul-9
7
Jan
-98
Jul-9
8
Jan
-99
Jul-9
9
Jan
-00
Jul-0
0
Jan
-01
Jul-0
1
Jan
-02
Jul-0
2
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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
.
Status of Universal Newborn Hearing Screeningin the United States (Dec 2001)
.Percentage of Births
Screened
90%+
21 - 50%1 - 20%
3
51 - 90%
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
Typical UNHS Screening Protocols(example for 1,000 newborns)
Hearing Loss=3
Normal Hearing=37
Diagnosisn=40
InpatientScreening
Fail=40
Pass=9601 S
tag
eA
AB
R
Hearing Loss=3Normal Hearing=7
InpatientScreening Pass=920
Fail=80 OutpatientScreening
n=80
Diagnosisn=10
Pass=90
Fail=10
2 S
tag
eO
AE
Diagnosisn=20
InpatientScreening
Pass=980
Fail=20 Hearing Loss=3
Normal Hearing=17
1 S
tag
eO
AE
/ A
AB
R
Protocols Used in Universal Newborn Hearing Screening Programs
Screening Procedures
Before Hospital Discharge After Hospital Discharge Percent of newborns
screened
OAE ------- 11.6%ABR ------- 23.3%OAE/ABR ------- 6.7%
OAE OAE 21.4%OAE ABR 4.2%ABR OAE 2.8%
ABR ABR 23.2%
OAE/ABR OAE/ABR 6.4%
Other protocol ---------- 0.3%
Efficiency of Early Hearing Detection and Intervention
1999 2000 2001(6 mos)
(n=43,547) (n=46,771) (n=23,307)
Inpatient Refer Rates (state average) 85.2% 85.5% 87.5%
10 most effective hospitals 92.8% 93.4% 93.7%
10 least effective hospitals 70.7% 63.4% 74.4%
Outpatient completion (state average) 70.1% 67.1% 68.3%
10 most effective hospitals 94.5% 95.9% 94.7%
10 least effective hospitals 45.3% 52.9% 58.08%
Reported Completion of Diagnostic 133 of 357 165 of 380 41 of 110*
Evaluations (state average) 37.3% 43.4% 40%
% of babies who complete Diagnostic 33 of 133 65 of 165 12 of 41*
Eval & have permanent hearing loss 24.8% 39.4% 29.3%
Number of babies still “in process” 224 215 69
*only 3 months worth of data
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
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%
Tracking and Data Management
• 75% of states report at least some hospitals submit data to state about results of their screening program
• For those getting data, information was submitted for 62% of the births in last quarter
• 33% if submissions do not include identifying information --- making follow-up by state impossible
• Only 17% of states currently have any kind of linkage with other data systems (eg, Vital Statistics, metabolic, EI, Immunizations)
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
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 56.1% “receive diagnostic evaluations by 3 months of age
Availability of Pediatric Audiolgists
2
13
9
6 65
0
5
10
15
20
0-2.00
2.01 to 4.00
4.01 to 6.00
6.01 to 10.00
10.01 to 14.00
14.01 or more
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Pediatric Audiolgists per 10,000 Births per year
EHDI Materials Available from “State” Programs(n=54)
General Screening Brochure 39 states
What To Do If Your Baby Refers 35 states
What To Do If Your Baby has a Hearing Loss 41 states
Guidelines for Audiologic Diagnostic Evaluations 30 states
List of Qualified Pediatric Audiologists 39 states
Brochure about Genetics of Hearing Loss 7 states
Fair or Excellent Availability of Materials in other Languages 34 states
Average Age in Months
3
3
35
19
30
30
24
25
31
56
Coplan (1987)
Eissman et al. (1987)
Gustason (1987)
Meadow-Orlans (1987)
Yoshinago-Itano (1995)
Stein et al. (1990)
Mace et al. (1991)
O'Neil (1996)
Johnson et al. (1997)*
Vohr et al. (1998)*
0 10 20 30 40 50 60 70
Confirmation of Permanent Hearing Loss
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
Early Intervention• Part C of IDEA is an under used
resource
• 96% of state coordinators know who the Part C coordinator is
• 74% of states have someone on the IDEA Interagency Coordinating Council with experience / expertise in hearing loss with infants
• State Coordinators estimate:
– 53% of infants with hearing loss are enrolled in EI programs before 6 months of age
– 31% of states have adequate range of choices for type of EI programs
Percentage of State Coordinators Who Rate Early Intervention
Programs in His/Her State as Good or Excellent
For children with:
bilateral severe/profound losses 63%
bilateral mild/moderate losses 56%
unilateral losses 46%
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
EHDI and the Medical Home
Parent Groups
Mental Health
Birthing Hospital
Audiology
Primary Provider
Child/Family
ENT
GeneticsEarly
Intervention Programs
3rd Party Payers
Deaf Community
Services for Hearing Loss
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 aboutHearing screening, diagnosis, and intervention 41%
Shortage of qualified pediatric audiologists 49%
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
Parent’s Attitudes About Newborn Hearing Screening
After all hearing tests were completed, how did you feel? Strongly Agree
or Agree
Worried about my baby’s hearing 11%
Confused about the results of screening tests 10%
Glad hearing screening is done at this hospital 91%
Confident the hearing tests were correct 91%
Frustrated by how long it took to get results 13%
Happy with the professional way screening was done 86%
Confident about what I needed to do next 88%
If the analysis is limited to those whose babies did not pass the inpatient or outpatient screen
After all hearing tests were completed, how did you feel? Strongly Agree or Agree
total group subgroupWorried 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%
Information Wanted vs. Received by Parents at Hearing Loss ConfirmationInformation Wanted vs. Received by Parents
Martin, George, O'Neal, & Daly (1987); *Sweetow & Barrager (1980)
Degree of loss
Auditory system
Amplification
Educational options
Speech/Lang dev
Etiology
Home activities
*Written Information
*Financial Support
*Emotional Support
*Parent Contacts
*Referral Sources
0 20 40 60 80 100
Wanted
Received
“I am a great believer in luck, and I find that the harder I work, the more I have of it.” ---Thomas Jefferson