Transcript Status of Universal Newborn Hearing Screening in the United States

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
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Number of Programs
Number of Hospitals Doing Universal Newborn
Hearing Screening
Jul-02
65
Jan-02
Jul-01
Jan-01
Jul-00
Jan-00
Jul-99
Jan-99
Jul-98
100
90
80
70
60
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40
30
20
10 3
0
Jan-98
Jul-97
Jan-97
Jul-96
Jan-96
Jul-95
Jan-95
Jul-94
Jan-94
Jul-93
Jan-93
Number of Programs
Percentage of Births Screened for Hearing
Before Discharge
67
25
15
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
Status of Universal Newborn Hearing Screening
in the United States (Dec 2001)
.
.
Percentage of Births
Screened
90%+
51 - 90%
21 - 50%
1 - 20%
3
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 followup
Typical UNHS Screening Protocols
(example for 1,000 newborns)
Inpatient
Screening
1 Stage
OAE / AABR
Inpatient
Screening
Inpatient
Screening
Fail=80
Pass=920
Fail=40
Outpatient
Screening
n=80
Fail=10
Pass=90
Diagnosis
n=10
Diagnosis
n=40
Pass=960
Fail=20
Pass=980
Diagnosis
n=20
Hearing Loss=3
Normal Hearing=7
Hearing Loss=3
Normal Hearing=37
Hearing Loss=3
Normal Hearing=17
Protocols Used in Universal Newborn
Hearing Screening Programs
Screening Procedures
Before Hospital Discharge
After Hospital Discharge
Percent of newborns
screened
OAE
ABR
OAE/ABR
-------------------
11.6%
23.3%
6.7%
OAE
OAE
ABR
ABR
OAE/ABR
OAE
ABR
OAE
ABR
OAE/ABR
21.4%
4.2%
2.8%
23.2%
6.4%
Other protocol
----------
0.3%
Efficiency of Early Hearing Detection and Intervention
1999
(n=43,547)
2000
(n=46,771)
2001(6 mos)
(n=23,307)
Inpatient Refer Rates (state average)
10 most effective hospitals
10 least effective hospitals
85.2%
92.8%
70.7%
85.5%
93.4%
63.4%
87.5%
93.7%
74.4%
Outpatient completion (state average)
10 most effective hospitals
10 least effective hospitals
70.1%
94.5%
45.3%
67.1%
95.9%
52.9%
68.3%
94.7%
58.08%
Reported Completion of Diagnostic
Evaluations (state average)
133 of 357
37.3%
165 of 380
43.4%
41 of 110*
40%
% of babies who complete Diagnostic
Eval & have permanent hearing loss
33 of 133
24.8%
65 of 165
39.4%
12 of 41*
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
Site
Sample
Size
Prevalence
Per 1000
% of Refers
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
20
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13
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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
Confirmation of Permanent Hearing Loss
35
Coplan (1987)
19
Eissman et al. (1987)
30
Gustason (1987)
30
Meadow-Orlans (1987)
24
Yoshinago-Itano (1995)
25
Stein et al. (1990)
31
Mace et al. (1991)
56
O'Neil (1996)
3
Johnson et al. (1997)*
3
Vohr et al. (1998)*
0
10
20
30
40
50
Average Age in Months
60
70
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
Birthing
Hospital
Parent Groups
Audiology
Mental Health
Primary
Provider
3rd Party
Payers
ENT
Child/Family
Deaf
Community
Services for
Hearing Loss
Early
Intervention
Programs
Genetics
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
Hearing 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?
Worried about my baby’s hearing
Strongly Agree
or Agree
total group
subgroup
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
Information Wanted
Wanted vs.
vs. Received
Received by
by Parents
Parents
at Hearing Loss Confirmation
Degree of loss
Auditory system
Amplification
Educational options
Speech/Lang dev
Wanted
Received
Etiology
Home activities
*Written Information
*Financial Support
*Emotional Support
*Parent Contacts
*Referral Sources
0
20
40
60
80
Martin, George, O'Neal, & Daly (1987); *Sweetow & Barrager (1980)
100
“I am a great
believer in luck,
and I find that the
harder I work, the
more I have of it.”
---Thomas Jefferson