HITRACK: Solving Newborn Hearing Screening Tracking Issues

1
HITRACK Solving Newborn Hearing Screening
Tracking Issues
Karl R. White, PhD National Center for Hearing
Assessment and Management Utah State
University www.infanthearing.org
2
Percentage of Newborns Screened Prior to
Discharge
3
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

4
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

5
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)


6
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

7
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)

8
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

9
Healthy People 2010

• Increase to 100 the proportion of newborns
  served by state-sponsored early hearing detection
  and intervention programs
• Provide 100 of newborns access to screening
• Provide follow-up audiologic and medical
  evaluations before 3 months for infants requiring
  care
• Provide access to intervention before 6 months
  for infants who are hard of hearing and deaf

10
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.
11
Purposes of an EHDI Data System
12
Nature and Use of Information is
Different For

• Hospitals
• State Departments of Health
• National Agencies

13
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
14
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)
15
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.

16
Utah EHDI Data System
Hospital 1
Hospital 2
Hospital 3
State Department of Health
.
.
.
.
Hospital 21
17
Iowa EHDI System
Hospital 1
Hospital 2
.
Area Education
.
Agency 1
Hospital 9
Hospital 10
Hospital 11
Area Education
.
Agency 2
.
State Department of Health
Hospital 16
.
.
Hospital 17
.
Hospital 25
Hospital 26
Area Education
.
Agency 9
.
Hospital 35
18
Hawaii EHDI System
Hospital 1
Hospital 2
Zero-to-Three
State Department
Project
of Health
Hospital 3
.
.
.
.
Early Intervention
Hospital
Programs
19
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
20
Who Needs the Data?

• Screeners and program coordinators
• Hospital administrators
• Health care providers
• Public Health officials

21
What Type of Data is Needed?
Collected continuously by
CORE VARIABLES
everyone.
Everyone agrees they would be
OPTIONAL VARIABLES
nice, but some may not have
resources to collect (may not be
collected continuously).
Some people think they are
RESEARCH VARIABLES
important others should be
aware that some are collecting
them.
22
Examples of Possible
CORE VARIABLES OPTIONAL VARIABLES
RESEARCH VARIABLES
Gestational Age
Infant's last name
Time of Birth
Specific Results of
Medical ID
Sex
Diagnostic Tests
Date of Birth
Nursery Type
Date and Time of Screening
Test
Mother's Maiden Name
Birthweight
Type of Delivery
Birth Hospital
Amplification
Mother's Occupational
Screening Hospital
Age at Amplification
Noise Exposure
Inpatient Screen Result
Days in NICU
Outpatient Screen Result
JCIH Risk Indicators
Diagnostic Result
Age at Diagnosis
23
Options for Developing an EHDI Patient/Data
Management System

• Develop your own
• Modify an existing system, for example
• Heelstick data management system
• Electronic Birth Certificate (EBC)
• Purchase an existing system
• Whatever system you choose, should it be
  web-based?

24
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

25
North Carolina Heelstick Form
26
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).

27
Typical UNHS Screening Protocols (example for
1,000 newborns)
28
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

29
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 babys doctor

30
Audiological Diagnosis

• Often done at location other than screening
  hospital
• Requires coordination with babys doctor and ENT
• One visit often not sufficient
• Advantages in coordinating with Part C, IDEA
  Child Find activities

31
Enrollment in Early Intervention

• Continued need for data management and tracking
  because
• Early Intervention requires ongoing,
  multidisciplinary services
• Coordination is needed with the babys medical
  home
• Important to link late-identified children with
  original screening results

32
Issues to Consider Before Combining EHDI and
Heelstick

• 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

33
Issues to Consider Before Combining EHDI with
Heelstick or EBC

• 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 doesnt happen that way
• When are you finished with NBHS?
• How are outpatient NBHS screenings updated?

34
Issues to Consider Before Combining EHDI with
Heelstick or EBC (continued)

• Will hospitals 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?

35
Issues to Consider Before Combining EHDI with
Heelstick or EBC (continued)

• 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
• Mothers 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

36
Issues to Consider Before Combining EHDI with
Heelstick or EBC (continued)

• 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
• Mothers language
• Type of insurance
• 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

• Hearing loss risk factors
• Results for multiple tests or attempts
• Outpatient screening results

37
Issues to Consider Before Combining EHDI with
Heelstick or EBC (continued)

• Combining EHDI with Heelstick or EBCisnt 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)

38
Issues to Consider Before Combining EHDI with
Heelstick or EBC (continued)

• 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?

39
Issues to Consider Before Combining EHDI with
Heelstick or EBC (continued)

• 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

40
Issues to Consider Before Combining EHDI with
Heelstick or EBC (continued)

• 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

41
Is a Web-based System the Answer?

• Access?
• Speed?
• Linkages with existing data?
• Flexibility?
• Security?

42

• Demonstrations of
• Stand Alone system
• Web-based system
• (Demos of HITRACK are also available at
  www.hitrack.org)

43
Thin-Client Architecture
Benefits
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.

Database Server
Thin Client
Presentation Business Rule Layers
Software UI (user interface) is Web Browser
44
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.

Database Server
Business Rule Layer
Medium Client
Software UI Presentation
45
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

Database Server
Fat Client
Software UI Presentation Business Rules
46
Stand-alone Architecture
Benefits
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 users machine

Stand Alone
Software UI Presentation Business Rules and
Data Base
47
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.