Collecting and Reporting EHDI Data in New Jersey Kathryn Aveni, RNC, MPH Early Hearing Detection and Intervention Program, New Jersey Department of Health.

Collecting and Reporting EHDI Data

in New Jersey

Kathryn Aveni, RNC, MPH

Early Hearing Detection and Intervention Program,

New Jersey Department of Health and Senior Services


Goal

To ensure early identification and intervention for infants and children with hearing loss, New Jersey is developing a comprehensive EHDI registry that uses existing and new data sources, linking data from the Electronic Birth Certificate (EBC) system, follow-up diagnostic evaluation forms, the Special Child Health Services (SCHS) Registry, and Early Intervention programs.


Legislation

• Universal newborn hearing screening was legislated in New Jersey effective January 1, 2002

• Prior regulations requiredscreening of high-risk infants only

• Current legislation also requires that the NJ Department of Health and Senior Services (NJDHSS) establish a central registry to provide statistical data, follow-up counseling, intervention and educational services


EHDI Database

Inpatient Hearing Screening

Outpatient Screening and

Diagnostic Exam Follow-up Forms

EHDI Database

MS Access

Data Entry

Data Entry EBC System

weekly downloads

EI System

SCHS Registry

Reports

manual and computer matching

Linkage being developed


EHDI Database• The EHDI program uses an Access database • EBC information is imported from text files

created weekly by the NJ Bureau of Vital Statistics

• Follow-up Information submitted on Newborn Hearing Follow-Up Reports is entered into an Access form

• Linkages are being made to obtain SCHS and EI data

• Database is used to generate statistics and run reports


Electronic Birth Certificate Data

• NJ utilizes an Electronic Birth Certificate (EBC) system (Genesis, DOS version)

• Weekly text files are provided by Vital Statistics

• New or altered EBC records are appended to the EHDI database weekly

• Periodic matches are made to the state births file to ascertain babies born at home and out-of-state births


Electronic Birth Certificate Data

• Data elements in the EBC include:– Demographics: residence, race, ethnicity, etc.– Hearing Screening information: done (Y/N), test type

(ABR/OAE), test results (pass/fail), consent obtained (Y/N)– Risk Factors:

Birth weight, Apgar scores, NICU admit, meningitis, stigmata, craniofacial abnormalities, hyperbilirubinemia w/ exchange transfusion, PPHN, TORCH, syphilis, ototoxic drugs, ECMO, mechanical ventilation, family history of hearing loss

• Next update to the EBC system (mid-2003) will add ear-specific results, test date, and primary language to accommodate EHDI data elements


Follow-Up Forms


Data Entry - Follow-up Forms


Special Child Health Services Registry

• New Jersey legislation enacted in 1983 (NJSA 26:8-40.21) requires that all children with a birth defect diagnosed by 1 year of age be reported to the state Special Child Health Services Registry

• Hearing screening legislation requires reporting of any hearing loss (including mild or unilateral loss) for children of any age to the SCHS registry

• Registered cases are referred to the county-based case management system within ten days of receipt of registration

• Registrations are entered into a SAS database


Early Intervention Database• The EI program uses the FACTORS system for record-

keeping, reporting, and coordination of services in the IFSP plan. It is a software system with one database shared by a variety of DHSS agencies

• Data elements in FACTORS:– Demographics: Child’s name, address, SSN, DOB, gender, ethnicity,

county of residence, phone number, presumptive diagnosis, and primary language

– Case Status: IFSP status (i.e. completed, interim), date of referral, reason for case closing, and referral source

– Service Coordination Activities: Date of service, type of service, service setting, program providing service, staff providing service

– Funding Sources: Third party sources of primary and secondary insurance including Medicaid and special EIS funding

• As of 12/1/02, there were 113 children with hearing impairment receiving EI services in New Jersey


EHDI Linkages to SCHS and EI

SCHS registry and EI database are administered in the same DHSS division as EHDI, facilitating access to the data

Computerized file linkages are currently under development.As an interim step, manual matching of reports of children with hearing loss are generated from the 3 systems

Discrepancies are researched and the appropriate database is updated accordingly


CDC Minimum EHDI Data Set - New Jersey Sources

• Electronic Birth Certificate:– Demographic and identifier information (DOB,

baby’s name, mother’s name, race, ethnicity, etc)– Risk factors– Inpatient screening test type and results

• SCHS Registry:– Risk factors

• EI Database:– Early intervention services, medical home


Reports

• Quarterly reports sent to hospitals (to CEO, MCH Nursing Director, and individuals responsible for conducting inpatient screening):

– Summary statistics• compare hospital to statewide totals• compare quarter-to-quarter data

– Detailed data• listing of children for whom follow-up testing was

required and status of follow-up


Summary StatisticsNew Jersey Department of Health and Senior Services

Early Hearing Detection and Intervention4th Quarter 2002 Birthing Facility Summary Inpatient Screening Report

Live Births andTransfers In

Discharged &Screened

Discharged &Failed

Screening

Discharged &Any Risk Factor

Number ofBabies

RequiringFollow-Up

Follow-UpReported

NJ Total 1st Quarter 26707 94.8% 4.0% 6.6% 2365 23.7%NJ Total 2nd Quarter 28030 97.4% 4.5% 6.8% 1923 33.2%NJ Total 3rd Quarter 29826 97.6% 5.0% 6.7% 2123 38.8%NJ Total 4th Quarter 27442 98.0% 4.3% 6.6% 1645 23.3%

Sample Hospital

1st Quarter 2002 1055 99.2% 2.6% 9.0% 34 79.4%2nd Quarter 2002 1152 99.5% 3.4% 11.5% 45 71.1%3rd Quarter 2002 1177 99.3% 2.6% 10.9% 37 51.4%4th Quarter 2002 1102 99.1% 2.4% 9.1% 36 25.0%


Detail Report


Impact of Reports

• Increased recognition by hospitals of the need to report accurate and complete information

• Hospitals want rates to be above average to have a competitive edge

• EBC data entry errors reconciled• Recognition of areas where providers were not

sending follow-up documentation• Some hospitals have used the reports to make

the case to administration of the need for additional screening staff


Future Directions for Data Use

• EHDI program is currently investigating using the EBC information on baby’s provider to send letters inquiring about children known to have missed or failed screening or have risk factors for whom follow-up care has not been reported

• In the future, the EHDI program will send reminder letters to parents of children with risk factors

• Future quarterly reports will be modified to include long-term follow-up report results for children with risk factors for delayed onset hearing loss.


So…..Test

Wouldn’t you like to test those ears???


Document the Results...


…and Ensure Good Hearing

Collecting and Reporting EHDI Data in New Jersey Kathryn Aveni, RNC, MPH Early Hearing Detection and Intervention Program, New Jersey Department of Health.

Documents

new jersey slide

senior services slide

new jersey effective

new data sources

ei services

senior services ehdi

senior services njdhss

nj department of health