HI*TRACK: Solving Newborn Hearing Screening Tracking Issues Karl R. White, PhD National Center for Hearing Assessment and Management Utah State University.

HI*TRACK: Solving Newborn Hearing Screening Tracking Issues

Karl R. White, PhD

National Center for Hearing Assessment and Management Utah State University

www.infanthearing.org

http://www.infanthearing.org/

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Percentage of Newborns Screened Prior to Discharge

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 (1/96 - 12/96) 27,938 1.65

Utah (7/93 - 12/94) 4,012 2.99

Hawaii (1/96 - 12/96) 9,605 4.15

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 "Refers" is a Major Challenge(continued)

Initial Rescreen Births Screened Refer Rescreen Refer

Rhode Island 53,121 52,659 5,397 4,575 677 (1/93 - 12/96) (99%) (10%) (85%) (1.3%)

Hawaii 10,584 9,605 1,204 991 121(1/96 - 12/96) (91%) (12%) (82%) (1.3%)

New York 28,951 27,938 1,953 1,040 245 (1/96-12/96) (96.5%) (7%) (53%) (0.8%)

Examples of JCIH Benchmarks and Quality Indicators

• % of infants screeened during birth admission

• % of infants who do not pass birth admission screen

• % of families who refuse hearing screeening

• % of infants and families whose care is coordinated between the medical home and related professionals

• % of infants with completed audilogic and medical evaluations by 3 months of age

• % of infants with confirmed hearing loss :

– referred for otologic evaluation

– that have a signed IFSP by 6 months of age

• % of infants with hearing aids receiving audiologic monitoring at least every 3 months

Data Required for MCHB Project Annual Reports

• # of infants screened (95%)

• # of infants referred for audiologic diagnosis

• # and age of infants receiving audiologic diagnosis (before 3 months)

• # of infants

– in a medical home

– connected with family-to-family support

• # and age at which identified infants are enrolled in early intervention services (before 6 months)

CDC EHDI Reporting System• # of live births

• # screened prior to discharge

• # screened before 1 month of age

• # referred from screening for audiologic evaluation

• # with audiological diagnosis by 3 months of age

• # with permanent congenital hearing loss (0-7 years)

• Hearing loss classified by type, degree and laterality

• Average/median age at which hearing loss diagnosised

• # of infants receiving intervention by 6 months of age

Good work,but I think we mightneed just a little moredetail right here.

OPERATING SUCCESSFUL EHDI PROGRAMS

Then amiracleoccurs

out

Start

Purposes of an EHDI Data System

Screening

Research

Diagnosis InterventionMedical, Audiological and

Educational

Program Improvement and Quality Assurance

Nature and Use of Information is Different For:

Hospitals

State Departments of Health

National Agencies

Computerized Patient/Data Management for Hospital-based UNHS Programs

Tracking/scheduling related to screening, follow-up, diagnosis, and intervention

Communication with stakeholders (e.g., parents, physicians, audiologists)

Reporting to funding and administrative agencies

Program management, quality control, and risk management

Statewide EHDI Data System

Monitoring program status to identify in-service and technical support needs.

Safety net for babies who "fall through the cracks"

Assisting with follow-up / enrollment for diagnostic and intervention programs

Access to data for public health policy and administrative decisions.

Linking to other Public Health Information databases (e.g., Immunization, WIC, Vital Statistics, Early Intervention, Birth Defects)

Examples of Benefits from Linking EHDI Database with Other Public Health Information Systems

• An infant referred from the hospital-based UNHS program, but lost to follow-up, could be identified and provided with EHDI services when he or she comes in for the DPT Immunization at eight weeks of age.

• By linking the Birth Defects Registry and EHDI data, children with birth defects that make them substantially more likely to develop late onset losses could be monitored and provided with assistance at a much earlier time.

• Many of the children who become “lost” for immunizations or birth defects tracking are the same children who are lost for EHDI. By sharing information, fewer resources are needed to more successfully find and provide services to “lost” children.

• Linking the EHDI and vital statistics allows a population-based system to be created so that every live birth in the state is included in the EHDI system.

Utah EHDI Data System

State Department of Health

Hospital 1

Hospital 2

Hospital 3 . . . .Hospital 21

Iowa EHDI System


Hospital 1Hospital 2 . .Hospital 9


Hospital 17


Area Education Agency #1



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.

.

Hawaii EHDI System

Hospital 1

Hospital 2

Hospital 3 . . . .Hospital


Zero-to-Three Project

Early Intervention Programs

Hospitals Most Likely to Participate in a State EHDI Database If:

it provides locally useful data

gathering data is quick

transfer to the state is trouble-free

it reduces other reporting requirements

It reduces risk

Who Needs the Data?

• Screeners and program coordinators

• Hospital administrators

• Health care providers

• Public Health officials

What Type of Data is Needed?

CORE VARIABLES:

OPTIONAL VARIABLES:

RESEARCH VARIABLES:

Collected continuously by everyone.

Everyone agrees they would be nice, but some may not have resources to collect (may not be collected continuously).

Some people think they are important; others should be aware that some are collecting them.

CORE VARIABLES OPTIONAL VARIABLES RESEARCH VARIABLES

Infant's last name

Medical ID#

Date of Birth

Mother's Maiden Name

Birth Hospital

Screening Hospital

Inpatient Screen Result

Outpatient Screen Result

Diagnostic Result

Age at Diagnosis

Time of Birth

Sex

Nursery Type

Birthweight

Amplification

Age at Amplification

Gestational Age

Specific Results of Diagnostic Tests

Date and Time of Screening Test

Type of Delivery

Mother's Occupational Noise Exposure

Days in NICU

JCIH Risk Indicators

Examples of Possible:

Options for Developing an EHDI Patient/Data Management System

• Develop your own

• Modify an existing system, for example

o “Heelstick” data management system

o Electronic Birth Certificate (EBC)

• Purchase an existing system

• Whatever system you choose, should it be web-based?

Combining EHDI Data Management with Existing Systems is Logical Because :

• Combining EHDI with Heelstick is attractive because:– Both do initial screening of babies in the nursery prior to hospital

discharge

– Both do 2nd stage or outpatient screening for a significant number of babies

– Poor follow-up is currently the biggest challenge for EHDI programs

– Heelstick programs have been extremely successful with follow-up

– The infrastructure for Heelstick follow-up system is already in place

• Combining with Electronic Birth Certificate is an attractive option because the EBC is:– Legally required for every birth

– Contains wealth of demographic and medical data

North Carolina Heelstick Form

Heelstick Screening Procedures

• Small sample of blood collected and put on Heelstick form (filter paper) prior to discharge, but after 24 hours of age

• Form sent to laboratory within hours or days for analysis

• A significant number of initial screenings need to be redone because of poor technique

• Results reported to State Follow-up Coordinator who contacts physicians and parents about “abnormals” (urgency depends on disease)

• Depending on state, about 1% to 2 % are abnormal. Additional blood is collected for these babies to confirm the screening result (diagnosis).

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

Inpatient Hearing Screening

• Multiple attempts are very common

• Different screeners often attempt the same baby

• Screening can be done any time from shortly after birth to minutes before discharge

• Use of both OAE and AABR becoming more common

• Successful management requires more than knowing whether baby passed or referred

Outpatient Screening

• Depending on protocol, outpatient screening required for 2-10% of all births

• Usually done between 2-14 days following discharge

• Sometimes done at a different location from inpatient screening

• Requires coordination with baby’s doctor

Audiological Diagnosis• Often done at location other than

screening hospital

• Requires coordination with baby’s doctor and ENT

• One visit often not sufficient

• Advantages in coordinating with Part C, IDEA Child Find activities

Enrollment in Early Intervention

• Continued need for data management and tracking because:

– Early Intervention requires ongoing, multidisciplinary services

– Coordination is needed with the baby’s medical home

• Important to link late-identified children with original screening results

Issues to Consider Before Combining EHDI and Heelstick

1. Heelstick Screening has added many new tests over the years. But, Newborn Hearing Screening (NBHS) is not just another analysis of the bloodspot

NBHS screening personnel often involved in collection and analysis of screening data, follow-up, and diagnostic procedures

When, where, how, and by whom NBHS screening is done is quite different than Heelstick

Issues to Consider Before Combining EHDI with Heelstick or EBC

1. Heelstick Screening has added many new tests over the years. But, Newborn Hearing Screening (NBHS) is not just another analysis of the bloodspot

Screening personnel often involved in collection and analysis of screening data, follow-up, and diagnostic procedures

When, where, how, and by whom NBHS screening is done is quite different than Heelstick

2. Timing of data collection and entry

Ideal if Heelstick or EBC is always followed by NBHS, but it doesn’t happen that way

When are you finished with NBHS?

How are outpatient NBHS screenings updated?

Issues to Consider Before Combining

EHDI with Heelstick or EBC (continued)

3. Will hospital’s staff have timely access to the data for program improvement and follow-up?

Screener performance

Scheduling outpatient screening, referring for Diagnostic Assessments, confirmed hearing loss

Can hospitals update data

Who decides which data is most accurate?



4. Will the Heelstick or EBC form include all the “fields” you need?

Heelstickor EBC forms with NBHS fields usually only include type of test, left ear result, right ear result. Do you need….?

Screener ID

Mother’s language

Type of insurance

Who decides if and when you can add or modify “fields”

Hearing loss risk factors

Results for multiple tests or attempts

Outpatient screening results



4. Will the Heelstick or EBC form include all the “fields” you need?

Heelstick and EBC forms with NBHS fields usually only include type of test, left ear result, right ear result. Do you need….?

Screener ID

Mother’s language

Type of insurance

Who decides if and when you can add or modify “fields”

5. Can you transfer data from screening machines directly to the Heelstick or EBC?

Duplicate data entry

Transmission errors

Hearing loss risk factors

Results for multiple tests or attempts

Outpatient screening results

Issues to Consider Before Combining EHDI

with Heelstick or EBC (continued)

6. Combining EHDI with Heelstick or EBCisn’t free

Costs of modifying and reprinting forms is very small

Cost of adding fields to Heelstick follow-up software and generating new letters / reports can be substantial ($50K+)

Cost of developing software to process EBC data for EHDI data management system can be even more expensive

Costs and risks of duplicate data entry are significant (screener records info, transfers to Heelstick form, lab personnel keypunch)



7. Follow-up of babies requires substantial personnel resources whether or not NBHS is combined with Heelstick or EBC

Although it varies widely, Heelstick follow-up typically requires about 1 FTE per 30,000 births - - - expect similar resources for NBHS

2% to 10% of babies will require some type of follow-up for NBHS

Do Heelstick follow-up staff understand EHDI issues well enough to do follow-up?



8. Sources of information are quite different for diagnostic confirmation of screening results

For Heelstick: New blood specimen is submitted to lab by doctor or hospital, lab does analysis and sends to Heelstick Coordinator

For NBHS: Information is reported in various forms to

Physician, hospital, and / or state EHDI coordinator

from hospitals, community-based audiologists, physicians



8. Sources of information are quite different for diagnostic confirmation of screening results

For Heelstick: New blood specimen is submitted to lab by doctor or hospital, lab does analysis and sends to Heelstick Coordinator

For NBHS: Information is reported in various forms to hospital or state EHDI coordinator from hospitals, community-based audiologists, physicians

Is a Web-based System the Answer?

Access?

Speed?

Linkages with existing data?

Flexibility?

Security?

Demonstrations of:

Stand Alone system

Web-based system(Demos of HI*TRACK are also available at www.hitrack.org)

Thin Client

Database Server

Thin-Client ArchitectureBenefits Issues

• Installation on the client machine is not required.

• Software updates do not require any maintenance on the client machines.

• Cheaper to deploy.

• Reduced user interface functionality.

• Slower response times for user interactions.

• If network stops, work stops.

• Difficult to integrate with third party screening software.

Presentation & Business Rule Layers

Software = UI (user interface) is Web Browser

Medium Client

Business Rule Layer

Database Server

Medium-Client Architecture

Benefits Issues

• Better responsiveness than thin-client.

• More feature rich user interface.

• “Business rule” changes require no change on clients.

• Better integration with third party screening software.

• Client requires software to be installed.

• If network stops, work stops.

• User interface changes require the clients to be updated.

Software = UI & Presentation

Fat Client

Database Server

Fat-Client Architecture

Benefits Issues

• Full feature user interface.

• Even better user responsiveness.

• Good integration with third party screening software.

• Software changes require the clients to be updated.

•If network stops, some features not available

Software = UI & Presentation & Business Rules

StandAlone

Stand-alone ArchitectureBenefits Issues

• Full feature user interface.

• Best user responsiveness.

• Work is not dependent on the network.

• Best integration with third party screening software.

• Software changes require updates to be installed.

•Can only be accessed from the user’s machine

Software = UI & Presentation & Business Rules

and Data Base

Good work,but I think we mightneed just a little moredetail right here.

OPERATING SUCCESSFUL EHDI PROGRAMS

Then amiracleoccurs

out

Start

HI*TRACK: Solving Newborn Hearing Screening Tracking Issues Karl R. White, PhD National Center for Hearing Assessment and Management Utah State University.

Documents

age of infants

months of age slide

discharge slide

ehdi system

deaf slide

risk management slide

ehdi services

quality assurance slide