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.

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