tracking for high risk conditions new jersey department of health and senior services leslie...
DESCRIPTION
New Jersey Department of Health and Senior Services Phase-in period had been given to facilities May 15, December 31, 2001: risk factors for hearing loss; infants with risk must have electrophysiological screen Law/rules specify confidentiality of reports Risk-based screening has been replaced by Electrophysiological Universal Hearing Screening Mandated ScreeningTRANSCRIPT
TRACKING FOR HIGH RISK CONDITIONS
New Jersey Department of Health and Senior Services
Leslie Beres-Sochka, MSProgram Manager
Kathy Aveni, RNC, MPHResearch Scientist
Early Identification and Monitoring ProgramSpecial Child, Adult and Early
Intervention Services
New Jersey Department of Health and Senior Services
New Jersey Department of Health began hearing screening of newborns in 1980
Originally risk-based screening Hearing Screening is required by NJ
law (P.L. 2001, c.373, NJSA 26:2-101 et seq.) and rules (NJAC 8:19 subchapter 1)
History of Hearing Screening
New Jersey Department of Health and Senior Services
Phase-in period had been given to facilities
May 15, 2000 - December 31, 2001: risk factors for hearing loss; infants
with risk must have electrophysiological screen
Law/rules specify confidentiality of reports
Risk-based screening has been replaced by Electrophysiological Universal Hearing Screening
Mandated Screening
New Jersey Department of Health and Senior Services
Effective January 1, 2002 ALL newborns must be screened using an electrophysiological screening device
Under NJ rules, the responsibilities of birthing facilities, physicians, and midwives are specified
Screening results are reported to DHSS via the Electronic Birth Certificate (EBC)
Mandated Screening
New Jersey Department of Health and Senior Services
Diagnostic Evaluation - should be completed by 3 months of age
Results must be reported to EHDI Program using the Follow-up form
Children with hearing loss must be registered with the SCHS Registry link to SCHS county case management
link to EI case management
Mandated Universal Screening
New Jersey Department of Health and Senior Services
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 loss at any age is to be reported to the Registry Registered cases are referred to the county-based case
management system within 10 days of receipt of registration
Registrations are entered into a SAS database Hearing risk factors that are not evident at birth
(syndromes, etc.) may be identified through SCHS registrations
New Jersey Department of Health and Senior Services
Tracking LegislationC.26:2-103.6 Central registry of newborns at risk
of hearing loss.6. a. The commissioner shall establish a central
registry of newborns identified as having or being at risk of developing a hearing loss. The information in the central registry shall be used for the purposes of compiling statistical information and providing follow-up counseling, intervention and educational services to the parents of the newborns listed in the registry.
New Jersey Department of Health and Senior Services
Newborn Hearing Risk Factors in New Jersey Law
ECMO (extra corporeal membrane oxygenation)
Prolonged mechanical ventilation, 5 days or longer
Persistent pulmonary hypertension
In utero infection (TORCH) Family history of childhood
hearing loss Parent/caregiver concern Head trauma Recurrent or persistent otitis
media
One minute Apgar 0-4 or 5 minute Apgar 0-6
Birth weight less than 1500 grams Bacterial or viral meningitis Cranio-facial abnormalities Syndromes with known
association to hearing loss (Waarenberg, Down syndrome, Klipel-Feil)
Hyperbilirubinemia requiring exchange transfusion
Ototoxic medication administered for more than 14 days (for example, gentamycin and kanamycin)
New Jersey Department of Health and Senior Services
Risk Factor Information in the Electronic Birth
Certificate Data ECMO (extra corporeal
membrane oxygenation) Ototoxic medication
administered for more than 14 days (for example, gentamycin and kanamycin)
Prolonged mechanical ventilation, 5 days or longer
Persistent pulmonary hypertension
Family history of childhood hearing loss
One minute Apgar 0-4 or 5 minute Apgar 0-6
Birth weight less than 1500 g Bacterial or viral meningitis Cranio-facial abnormalities Syndromes with known
association to hearing loss (Waarenberg, Down syndrome, Klipel-Feil)
Hyperbilirubinemia requiring exchange transfusion
In utero infection (TORCH)
New Jersey Department of Health and Senior Services
Risk Factor Information in the Electronic Birth
Certificate DataRisk Factor Ascertainment
Nursery Staff review chart for risk factors. EBC ‘Worksheet’ is filled out reflecting presence or absence
of risk factors. EBC data clerk enters risk factors onto the EBC. EBC data sent to EHDI program weekly. EHDI Program populates NJ-EHDI data base with risk factor
information.
New Jersey Department of Health and Senior Services
EHDI Projects EHDI Registry
CDC-funded cooperative agreement to create data linkages with EBC, SCHS registry and EI database to monitor UNHS implementation and to track diagnosis and treatment of children with a hearing loss or at risk for developing a hearing loss
Follow-up HRSA-funded grant to locate children who fail to
show for follow-up testing and to ensure babies do not “fall through the cracks”
New Jersey Department of Health and Senior Services
EHDI RegistryData Sources: Electronic Birth Certificate - Data on type of
screening, results, demographics and risk factors Follow-up forms - Data on outpatient testing results
reported on standard forms are entered into EHDI database
Special Child Health Services Registry - Data provides confirmation of diagnosis and age at diagnosis
Early Intervention database - Data on EI enrollment, age at enrollment and services being received
New Jersey Department of Health and Senior Services
Percent of Newborns Screened Prior to
Discharge
30.3
42.6
54.9
68.6
97.0
0102030405060708090100
1998 1999 2000 2001 2002(prelim.)
Source: EBC data
New Jersey Department of Health and Senior Services
Screening of Babies with Risk Factor for Hearing
Loss
43.856.8
68.178.5
95.7
0
20
40
60
80
100
1998 1999 2000 2001 2002
Percent of Babies with Hearing Loss Risk Factor Screened Before Hospital Discharge
Source: EBC data
New Jersey Department of Health and Senior Services
Risk Factor Rates
6.6
6.86.7
7.0
6.6
6.0
6.2
6.4
6.6
6.8
7.0
1998 1999 2000 2001 2002
Percent of Babies Discharged Home with One or More Risk Factors for Hearing Loss
Source: EBC data
New Jersey Department of Health and Senior Services
Risk Factor RatesPercent of Babies Discharged Home with Each
Hearing Loss Risk Factor2.59
1.99
1.62
0.87
0.270.10
0.05 0.030.02
0.00
0.50
1.00
1.50
2.00
2.50
Infants born in 2002 who were discharged home
Family Hx
Ototoxic drugs
Low Apgar
VLBW
>4 days mechanicalventilationPersistent pulmonaryhypertensionSyphilis
Down syndrome
Hyperbilirubinemia w/exchange transfusion
New Jersey Department of Health and Senior Services
High Risk Tracking Strategies
Routine re-screening of children with risk factors is reported to the NJ EHDI program using the Newborn Hearing Follow-Up Report form
Data from the Follow-Up form is entered into the EHDI database
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