1. 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 EHDI meetingFebruary 3, 2006

2. 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.

3. New Jersey Department of Health and Senior Services About New Jersey Annual birthrate of about 114,000 live births 9 th 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

4. New Jersey Department of Health and Senior Services 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)

5. New Jersey Department of Health and Senior Services 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

6. New Jersey Department of Health and Senior Services 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

7. New Jersey Department of Health and Senior Services EHDI Database Inpatient Hearing Screening Outpatient Screening and Diagnostic Exam Follow-up Forms EHDI Database MS Access Data Entry EBC System weekly downloads EI System SCHS Registry Reports manual and computer matching electronic files matched periodically

8. New Jersey Department of Health and Senior Services 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

9. New Jersey Department of Health and Senior Services Screened before nursery discharge

10. New Jersey Department of Health and Senior Services Percent of babies with refer result on inpatient screening

11. New Jersey Department of Health and Senior Services Percent with outpatient follow-up documented *Includes both children receiving either outpatient rescreening or diagnostic testing

12. New Jersey Department of Health and Senior Services 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?

13. New Jersey Department of Health and Senior Services 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

14. New Jersey Department of Health and Senior Services Follow-up on Refers by County of Residence January-June 2005 *combined due to <10 in each

15. New Jersey Department of Health and Senior Services Follow-up on Refers by County/Median Income January-June 2005 *combined due to <10 in each

16. New Jersey Department of Health and Senior Services 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

17. New Jersey Department of Health and Senior Services 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

18. New Jersey Department of Health and Senior Services Follow-up on Refers by Race/Ethnicity January-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%

19. New Jersey Department of Health and Senior Services Follow-up on Refers by Language January-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%

20. New Jersey Department of Health and Senior Services Surprised??? Rate of 83.3% in the Portuguese-speaking population….. 22 of the 24 Portuguese-speaking families delivered at 1 hospital This hospitals 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

21. New Jersey Department of Health and Senior Services Hospital-specific Follow-up on Refers January-June 2005

22. New Jersey Department of Health and Senior Services Follow-up on Refers by Mothers Place of Birth January-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%

23. New Jersey Department of Health and Senior Services Follow-up on Refers by Maternal Characteristics January-June 2005 Statewide follow-up rate = 61.5% Mothers 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 1 st child (n=974)65.5% 2 nd child (n=821)62.5% 3 rd child (n=441)58.5% 4 th child or more (n=121)52.1%

24. New Jersey Department of Health and Senior Services Follow-up on Refers by Maternal Age January-June 2005

25. New Jersey Department of Health and Senior Services Follow-up on Refers by Income-related Characteristics January-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%

26. New Jersey Department of Health and Senior Services Follow-up on Refers by Pediatric Provider January-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%

27. New Jersey Department of Health and Senior Services Follow-up on Refers by Prenatal Care Onset January-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%

28. New Jersey Department of Health and Senior Services 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-up Hospital variations in policies and procedures impact follow-up rates NJ data shows evidence of racial and ethnic disparities in follow-up rates NJ data shows evidence that several socio- demographic predictors of other pediatric health care utilization patterns are also predictive of hearing screening follow-up

29. New Jersey Department of Health and Senior Services 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.