Transcript HiTrack: Solving Newborn Hearing Screening Tracking Issues

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
90.0%
80.0%
Percentage of Newborns Screened Prior to Discharge
70.0%
60.0%
50.0%
40.0%
30.0%
20.0%
10.0%
Jan-03
Jan-02
Jan-01
Jan-00
Jan-99
Jan-98
Jan-97
Jan-96
Jan-95
Jan-94
Jan-93
0.0%
Rate Per 1000 of Permanent Childhood
Hearing Loss in UNHS Programs
Site
Sample
Size
Prevalence
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
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 "Refers" is a Major Challenge
(continued)
Initial
Refer
Rescreen
Rescreen
Refer
Births
Screened
Rhode Island
(1/93 - 12/96)
53,121
52,659
(99%)
5,397
(10%)
4,575
(85%)
677
(1.3%)
Hawaii
(1/96 - 12/96)
10,584
9,605
(91%)
1,204
(12%)
991
(82%)
121
(1.3%)
New York
(1/96-12/96)
28,951
27,938
(96.5%)
1,953
(7%)
1,040
(53%)
245
(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
OPERATING SUCCESSFUL EHDI PROGRAMS
out
Then a
miracle
occurs
Start
Good work,
but I think we might
need just a little more
detail right here.
Purposes of an EHDI Data System
Research
Program Improvement
and Quality Assurance
Screening
Diagnosis
Intervention
Medical, Audiological and
Educational
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
Hospital 1
Hospital 2
Hospital 3
.
.
.
.
Hospital 21
State Department of Health
Iowa EHDI System
Hospital 1
Hospital 2
.
.
Area Education
Agency #1
Hospital 9
Hospital 10
Hospital 11
.
.
Hospital 16
Area Education
Agency #2
State Department of Health
Hospital 17
.
.
.
Hospital 25
Hospital 26
.
.
Hospital 35
Area Education
Agency #9
Hawaii EHDI System
Hospital 1
Hospital 2
Hospital 3
.
.
.
.
Hospital
Zero-to-Three
Project
Early Intervention
Programs
State Department
of Health
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:
Collected continuously by
everyone.
OPTIONAL VARIABLES:
Everyone agrees they would be
nice, but some may not have
resources to collect (may not be
collected continuously).
RESEARCH VARIABLES:
Some people think they are
important; others should be
aware that some are collecting
them.
Examples of Possible:
CORE VARIABLES
OPTIONAL VARIABLES
RESEARCH VARIABLES
Infant's last name
Time of Birth
Gestational Age
Medical ID#
Sex
Specific Results of
Diagnostic Tests
Date of Birth
Nursery Type
Mother's Maiden Name
Birthweight
Date and Time of Screening
Test
Birth Hospital
Amplification
Type of Delivery
Screening Hospital
Age at Amplification
Mother's Occupational
Noise Exposure
Inpatient Screen Result
Days in NICU
Outpatient Screen Result
JCIH Risk Indicators
Diagnostic Result
Age at Diagnosis
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 webbased?
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)
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
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.
2.
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
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?
Issues to Consider Before Combining
EHDI with Heelstick or EBC (continued)
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
 Hearing loss risk factors

Mother’s language
 Results for multiple tests or attempts

Type of insurance
 Outpatient screening results
Who decides if and when you can add or modify “fields”
Issues to Consider Before Combining
EHDI with Heelstick or EBC (continued)
4.
Will the Heelstick or EBC form include all the “fields” you need?


5.
Heelstick and EBC forms with NBHS fields usually only include
type of test, left ear result, right ear result. Do you need….?

Screener ID
 Hearing loss risk factors

Mother’s language
 Results for multiple tests or attempts

Type of insurance
 Outpatient screening results
Who decides if and when you can add or modify “fields”
Can you transfer data from screening machines directly to the
Heelstick or EBC?

Duplicate data entry

Transmission errors
Issues to Consider Before Combining EHDI
with Heelstick or EBC (continued)
Combining EHDI with Heelstick or EBCisn’t free
6.

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)
Issues to Consider Before Combining EHDI
with Heelstick or EBC (continued)
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?
Issues to Consider Before Combining EHDI
with Heelstick or EBC (continued)
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
Issues to Consider Before Combining EHDI
with Heelstick or EBC (continued)
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 Architecture
Benefits
Issues
• Installation on the client
machine is not required.
• Reduced user interface
functionality.
• Software updates do not
require any maintenance on
the client machines.
• Slower response times for
user interactions.
• Cheaper to deploy.
• If network stops, work stops.
• Difficult to integrate with third
party screening software.
Thin
Client
Software = UI (user interface) is
Web Browser
Presentation & Business
Rule Layers
Database
Server
Benefits
Medium-Client
Architecture
Issues
• Better responsiveness than
thin-client.
• Client requires software
to be installed.
• More feature rich user
interface.
• If network stops, work
stops.
• “Business rule” changes
require no change on clients.
• User interface changes
require the clients to be
updated.
• Better integration with third
party screening software.
Mediu
m
Client
Software = UI & Presentation
Business
Rule Layer
Database
Server
Fat-Client Architecture
Benefits
• Full feature user interface.
• Even better user
responsiveness.
• Good integration with third
party screening software.
Issues
• Software changes
require the clients to be
updated.
•If network stops, some
features not available
Fat
Client
Software = UI & Presentation
& Business Rules
Database
Server
Stand-alone
Architecture
Benefits
• Full feature user interface.
Issues
• Software changes
require updates to be
installed.
• Best user responsiveness.
• Work is not dependent on
the network.
•Can only be accessed
from the user’s machine
• Best integration with third
party screening software.
Stand
Alone
Software = UI & Presentation
& Business Rules
and Data Base
OPERATING SUCCESSFUL EHDI PROGRAMS
out
Then a
miracle
occurs
Start
Good work,
but I think we might
need just a little more
detail right here.