Demographic Variations in EHDI Follow-up in New Jersey Kathryn Perko Aveni, RNC, MPH New Jersey Department of Health and Senior Services Trenton, NJ National

Demographic Variations in EHDI Follow-up in New Jersey

Kathryn Perko Aveni, RNC, MPHNew Jersey Department of Health and Senior

ServicesTrenton, NJ

National EHDI meeting February 3, 2006

New Jersey Department of Health and Senior Services

Faculty Disclosure Information

In the past 12 months, I have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) of the service(s) that will be discussed in my presentation.

This presentation will not include discussion of pharmaceuticals or devices that have not been approved by the FDA.


About New Jersey

Annual birthrate of about 114,000 live births 9th most populous state in the country Most densely populated state (1,134 persons per square mile) Compared to the nation as a whole, where 57% of 2003 births

were to White non-Hispanic women, NJ is more racially and ethnically diverse where mothers are: 51.2%: White, non-Hispanic 23.6%: Hispanic, any race 15.0% Black, non-Hispanic 8.7%: Asian or Pacific Islander

63 hospitals with maternity services, with annual birth rates at these hospital ranging from 200 to 7,000

Over 99% of births occur in hospitals


New Jersey EHDI Legislation

Mandates hospitals to provide screening before discharge or by 30 days of age

Mandates establishment of a central registry of newborns “identified as having or being at risk for developing a hearing loss”

All evaluations must be reported to the DHSS Requires Medicaid and insurers that are regulated by

the state to cover hearing evaluations. Hospitals shall have “guidelines for the provision of

follow-up services” (therefore State EHDI program does not currently do direct follow-up outreach)


New Jersey EHDI Rules

New administrative rules were adopted on December 19, 2005

Changes to the rules specifically aimed at improving follow-up include: Hospitals required to notify parents both face-to-face

and in writing of screening results Hospitals required to notify pediatrician of record of

results in writing Hospitals must make at least one reminder contact

(mail or phone) to families when baby is missed or when baby referred on inpatient screening

Hospitals must provide parents with suggested locations where follow-up testing can be performed


EHDI Database

The EHDI program uses an Access database Electronic Birth Certificate data, including hearing screening

information, is entered at each hospital and periodically polled via modem to the NJ Bureau of Vital Statistics

Vital Statistics creates weekly text files for the EHDI program which are made available via a secure FTP site

Follow-up information is submitted on paper Newborn Hearing Follow-Up Reports and entered into the EHDI database

Periodically, electronic files are obtained from the Special Child Health Services Registry (aka Birth Defects Registry) and the Early Intervention program and matched to the EHDI data

The EHDI database is used to generate statistics and run reports


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

electronic files matched

periodically


Electronic Birth Certificate Data

Data elements in the EBC and provided to the EHDI program include: Demographics: residence, race, ethnicity, etc. Hearing Screening information: test type, test

results, consent obtained, name of person/agency child referred to for follow-up audiologic evaluation

Risk Factors: Birth weight, Apgar scores, NICU admission

status, meningitis, stigmata, craniofacial abnormalities, hyperbilirubinemia w/ exchange transfusion, PPHN, TORCH, syphilis, ototoxic drugs, ECMO, mechanical ventilation, family history of hearing loss


Screened before nursery discharge

30.3%

42.6%

54.9%

68.6%

97.2% 98.3% 98.8% 98.9%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

1998 1999 2000 2001 2002 2003 2004 2005


Percent of babies with “refer” result on inpatient screening

5.8% 5.7%

5.1% 5.2%

4.5% 4.6% 4.5%

3.9%

0.0%

1.0%

2.0%

3.0%

4.0%

5.0%

6.0%

1998 1999 2000 2001 2002 2003 2004 2005


Percent with outpatient follow-up documented

15.1%

45.1%

23.7%

54.6%

26.5%

57.2%

24.2%

61.5%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

2002 2003 2004 2005 (Jan-June)

Not Screened as Inpatient

Referred Inpatient Screen

*Includes both children receiving either outpatient rescreening or diagnostic testing


Demographic Variations in Follow-Up

The NJ EHDI program has analyzed follow-up rates for various population subgroups in an effort to determine where best to focus activities on improving follow-up

What barriers impact follow-up? Access to care in area or transportation barriers? Language barriers? Cultural beliefs? Insurance barriers? Parent or pediatrician apathy or failure to perceive

importance of follow-up?


Birthing hospitals with no audiology dept.

Birthing hospitals with some audiology services

Birthing hospitals with Level 1 or 2 Diagnostic audiologic services

Non-birthing hospital facilities with Level 1 or 2 Diagnostic audiologic services


Follow-up on Refers by County of ResidenceJanuary-June 2005

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

*combined due to <10 in each


Follow-up on Refers by County/Median IncomeJanuary-June 2005

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

0

10,000

20,000

30,000

40,000

50,000

60,000

70,000

80,000

90,000 FURate

medianincome

*combined due to <10 in each


Demographic Predictors of Follow-up

Factors associated with failure to obtain newborn hearing screening follow-up may be similar to underutilization in other aspects of pediatric care

“Factors most strongly associated with undervaccination included having mothers who were black; had less than a high school education; were divorced, separated or widowed; had multiple children; were eligible for the Special Supplemental Nutrition Program for Women, Infants and Children (WIC) but not participating; or had incomes below 50% of the federal poverty level.” Pediatrics. 2003; 111: 1215-1218


Demographic Predictors of Follow-up

Children of women who began prenatal care in the first trimester were more likely to receive adequate numbers of WCVs [well child visits]

Children of mothers who were younger, less educated, black and unmarried also were less likely to receive adequate numbers of WCVs at each age, as were those from low-income families or from rural counties.

Data showed a consistent association between receiving all care in private physician offices and having an adequate number of WCVs.

Pediatrics. 1999; 103: 864-869


Follow-up on Refers by Race/EthnicityJanuary-June 2005

Statewide follow-up rate = 61.5% Hispanic, any race (n=1000) 57.4% White, non-Hispanic (n=864) 69.9% Black, non-Hispanic (n=402) 52.5% Asian Indian (n=118) 62.7% “Other”, unknown and categories

with <20, non-Hispanic (n=82) 57.3% Chinese (n=32) 78.1% Korean (n=27) 66.7%


Follow-up on Refers by LanguageJanuary-June 2005

Statewide follow-up rate = 61.5% English (n=1711) 63.4% Spanish (n=613) 56.3% “Other”, unknown and categories

with <10 (n=140) 59.3% Portuguese (n=24) 83.3% Korean (n=15) 60.0% Hindi (n=12) 58.3% Arabic (n=10)

40.0%


Surprised???

Rate of 83.3% in the Portuguese-speaking population…..

22 of the 24 Portuguese-speaking families delivered at 1 hospital

This hospital’s overall follow-up rate for Jan-June 2005 births is 89.1%

Policies/procedures at the hospital that are important in ensuring follow-up: Clear instructions re: follow-up process, location, etc.

are provided in Portuguese Outpatient re-screening done at no charge and with no

registration process in a small room adjacent to the nursery

Dedicated, caring staff


Hospital-specific Follow-up on RefersJanuary-June 2005

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%


Follow-up on Refers by Mother’s Place of BirthJanuary-June 2005

Statewide follow-up rate = 61.5% New Jersey (n=904) 58.5% Other U.S. (n=369) 72.1%

Mexico (n=282) 52.1% India (n=104) 63.5% Dominican Republic (n=95) 61.1% Ecuador (n=90) 75.6% Puerto Rico (n=59) 59.3% Peru (n=55) 65.5% Other non-U.S born with <50

+ unknown (n=567) 59.3%


Follow-up on Refers by Maternal CharacteristicsJanuary-June 2005

Statewide follow-up rate = 61.5% Mother’s education level:

<HS (n=578) 50.5% HS (n=764) 57.5% >HS (n=1129) 70.2%

Marital Status (at time of delivery): Single/divorced/widowed/separated (n=1034) 52.7% Married (n=1449) 68.1%

Parity 1st child (n=974) 65.5% 2nd child (n=821) 62.5% 3rd child (n=441) 58.5% 4th child or more (n=121) 52.1%


Follow-up on Refers by Maternal AgeJanuary-June 2005

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40


Follow-up on Refers by Income-related CharacteristicsJanuary-June 2005

Statewide follow-up rate = 61.5% Insurance:

Private (n=776) 67.5% Medicaid (n=376) 52.4% None (n=310) 47.7%

Mother receiving WIC during pregnancy: Yes (n=782) 52.0% No (n=1476) 66.7%

Employment (during year preceding delivery): Mom & Dad employed (n=1711) 67.6% Dad only employed (n=788) 60.0% Mom yes, dad no or unknown (n=218) 58.7% Mom no, dad no or unknown (n=307) 45.6%


Follow-up on Refers by Pediatric ProviderJanuary-June 2005

Statewide follow-up rate = 61.5% Future Source of Immunizations/Pediatric

Care: Clinic (n=747) 57.6% Private provider (n=1725) 63.3%


Follow-up on Refers by Prenatal Care OnsetJanuary-June 2005

Statewide follow-up rate = 61.5% Onset of Prenatal Care

Month 1-3 (n=1810) 65.6% Month 3-6 (n=506) 55.1% Month 6-9 (n=134) 40.3% None (n=81) 46.9%


Conclusions….

Many factors are predictive of outpatient follow-up rates for children who refer on inpatient screening:NJ data shows evidence that location/access to audiologic services is a predictor of follow-upHospital variations in policies and procedures impact follow-up rates NJ data shows evidence of racial and ethnic disparities in follow-up ratesNJ data shows evidence that several socio-demographic predictors of other pediatric health care utilization patterns are also predictive of hearing screening follow-up


Next Steps….

EHDI staff and subgrantees have done visits to pediatric offices to review EHDI goals and processes. Focus for 2006 will be on clinic settings.

Continue annual hospital site visits to review procedures and processes that will improve follow-up. For 2006, emphasis will be on ensuring implementation of administrative rule changes (verbal and written instruction to parents, notification of pediatricians, provision of suggested follow-up locations, one reminder contact after discharge, etc.)

Partnering with the Immunization Registry program to incorporate hearing screening results and follow-up status in their Web-based immunization tracking system. This may aid clinics and physicians in identifying children in need of follow-up care.

Continue to monitor follow-up rates for various subgroups to focus future efforts.

Documents

Demographic Variations in EHDI Follow-up in New Jersey Kathryn Perko Aveni, RNC, MPH New Jersey Department of Health and Senior Services Trenton, NJ National