1. SITE VISITS AS A TOOL FOR IMPROVING EHDI PROGRAMS New Jersey Early Hearing Detection & Intervention Program New Jersey Department of Health & Senior Services Trenton, New Jersey Kathy Aveni, RNC, MPHNancy Schneider, M.A., CCC-A, FAAA Research ScientistAudiologist Linda Biando, MSN, RNKaryn Dynak, BA Public Health ConsultantData Processing Programmer

2. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 NJ EHDI Program History 1977: Original newborn screening legislation introduced into NJ law (P.L. 1977, c.19) 1980: NJ Department of Health began hearing screening of newborns utilizing a risk-based screening approach Hospitals informed the NJDHSS of all children both with risk factors to hearing loss NJDHSS sent parents a letter (age 5 months post nursery d/c) to remind them of the importance of audiologic follow-up 5/00 – 12/01: Phase in period towards UNHS in NJ Infants with risk factors must undergo an physiologic screening <d/c beginning May 2000, with plan for UNHS by Jan. 1 2002 1/1/02: Universal hearing screening is required by NJ law (P.L. 2001, c.373 NJSA 26:2-101 et seq) & Rules (NJAC 8:19 subchapter 1)

3. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 Current NJ EHDI Program (until April, 2005) Responsibility for ensuring screening and follow-up occur are under the purview of the birthing hospital EHDI Program guidelines recommend periodic monitoring of infants for delayed onset hearing loss In-patient hearing screening results and risk factor indicators are forwarded to the NJ EHDI Program via the Electronic Birth Certificate (EBC) No child shall be screened for hearing loss if the parent objects on the grounds that screening conflicts with religious tenets

4. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 EHDI Reporting Processes In-patient hearing screening data forwarded to NJ EHDI from EBC via the Bureau of Vital Statistics & Registration Individuals performing outpatient screening and/or diagnostic audiologic testing report results via the NJ EHDI Newborn Hearing Follow-Up Report NJ EHDI adds outpatient data (including Lost to Follow-Up info.) into database NJ EHDI compiles data collected from the EBC & outpatient reports to generate Quarterly Reports which are sent to each birthing hospital for comparing hospital and State statistics and allowing review and reconciliation and data and identification of infants still requiring follow-up

5. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 Role of the NJ EHDI Team to enhance UNHS in NJ: To work with hospitals, audiologists, healthcare providers, parents, EI services, community agencies and others to ensure EHDI goals are met THROUGH THE USE OF: Annual site visits Collaboration with the BDR and EI Quarterly reports to all birthing hospitals Training to EBC staff on accurate and timely reporting Outreach to the audiology and pediatric communities Collaboration with parent support services Establishment of a Hearing Evaluation Council representing medical, family and community members

6. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 NJ EHDI Site Visits: Why? Meet & Greet the players (putting faces to written names) Establish relationship with each facility & NJ EHDI Increase compliance by boosting motivation Answering questions that staff may have re: EHDI goals & NJ EHDI reporting requirements Increase communication both within the hospital between departments & staff and to outpatient audiology facilities Provide essential information & updates on what NJ EHDI is doing to assist them in the UNHS process

7. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 NJ EHDI Site Visits: Who? hospital CEO nursery staff chief of pediatrics chief of neonatology in-house audiologists EBC data entry clerk MCH Director MCH Consortia representative Invitation extended to members of each department in each birthing hospital who are in any way related to their UNHS Program

8. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 NJ EHDI Site Visits: When? General NJ EHDI site visits began in 2003 –2003: 64 hospitals visited –2004: 63 hospitals visited Audiology site visits began in 2004 –41 additional site visits made exclusively to audiologists in addition to the 63 2004 EHDI visits Visits conducted in summer/autumn (1 – 2 visits per day) 2003 visits scheduled for 2 hours in duration with 2004 visits reduced to 1 hour Audiology visits scheduled from 1 to 1 ½ hours each

9. birthing facilities 64 in total NJ EHDI Site Visits: Where?

10. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 NJ EHDI Site Visits: What? General site visit presentations consist of: Introduction Review of EHDI goals and Best Practices Summary of birthing facilitys responsibilities Provide clarification & updates on NJ legislation Clarify reporting requirements for both in-pts. & out-pts. Review summary report from previous years site visit Comparison between Statewide v. hospital statistics Offer suggestions for UNHS Program improvement Report on current NJ projects to aid UNHS programs Provide information re: Case Management & Parent Support Services

11. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 NJ EHDI Site Visits: What? (continued) Chart review for Q & A Observation of a newborn hearing screening Screening protocol Screening environment Screening technique Screening documentation Hospitals are sent a site visit summary which includes: Status of hospitals current UNHS performance Recommendation for areas needing improvement A Site Visit Evaluation survey for NJ EHDI QA purposes

12. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 Rationale for Separate Audiology Site Visits (2004) General NJ EHDI Team site visits (<2004): –Typically included only 1 representative from hospital- based audiology programs –Time constraints did not allow for discussion specific to pediatric audiology issues. No outreach made to audiologists at non-birthing hospitals, private practices or otolaryngology offices Opportunity to review the audiologists role in the goals of the NJ EHDI program & NJ EHDI reporting concerns To obtain direct feedback on how NJ EHDI services can be improved for both practitioners and patients

13. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 NJ Audiology Statistics As of 12-04 there are: 427 NJ licensed audiologists 522 NJ licensed hearing aid dispensers includes both hearing aid dispensers & dispensing audiologists 35 of 63 birthing facilities offer in-house audiology services Results (N = 202) of a statewide survey to all audiologists & hearing aid dispensers reveal: 16 comprehensive audiology facilities 89 facilities offering select pediatric services 80 do not provide pediatric audiology services at all

14. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 Components of the 2004 Audiology Site Visits Reviewed NJ EHDI Programs goals and legislation Discussed purpose of reporting responsibilities to NJ EHDI Program and SCHS Registry Provision of pertinent evidenced-based documentation re: need for ear-specific testing; protocols for screening & diagnostic assessment Obtained feedback from practicing audiologists regarding all aspects of the current NJ EHDI Program Reviewed statewide and national services for families of children with diagnosed hearing loss SCHS Case Management; Parent-to-Parent; NJ Division of the Deaf and Hard of Hearing; NJ Hearing Healthcare Directory; pertinent websites for families of children with hearing loss

15. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 2004 Audiology Site Visit Summary 40 audiology visits (101 audiologists) to birthing & rehabilitation hospitals; ENT practices, etc. completed Follow-up QA surveys sent to site visit audiologists Feedback overwhelmingly favorable with the following concerns/questions noted: Follow-up protocol for children presenting with risk factors for hearing loss Defining lost to follow-up Improving reporting form for outpatient visits to minimize paperwork Improving hospital staff parental counseling for infants with refer results on screening

16. Birthing Facilities 64 in total Birthing Facilities w/Audiology Departments 35 in total AudiologySite Visits

17. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 2004 Audiology Site Visit Summary Since completion of site visits, both quality & quantity of Newborn Hearing Follow-Up Reports has improved in terms of: Ear specific information Referral for timely evaluation of children with atresia Shortened timeline for recall (as per ASHA Guidelines) Audiology feedback has contributed to modifications in the NJ EHDI outpatient reporting form and SCHS Registry as well as development of State Audiology Guidelines and a statewide Hearing Healthcare Directory Audiologists from various clinical venues now have a voice in the NJ EHDI Program

18. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 Site Visit Chart Review Results Charts reviewed during 2004 were for 2002/2003 births with known diagnosed hearing loss. Purpose - to verify accuracy of EBC data on inpatient results and risk indicators.

19. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 Chart Review Findings ACTUAL: EBC: Refer, -riskRefer, +riskNo, -riskNo, +riskPass, -riskPass, +risk Refer, -risk 4020---- Refer, +risk -8---- No, -risk 3153-- No, +risk ---2-- Pass, -risk 153--65 Pass, +risk 1----1 Incorrectly appear to be late-onsetTrue late-onset Summary: Results (only) correct on 80% of this sample of 113 charts Risks factors (only) correct on 71% Risk and results correct (green cells) on 55%

20. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 Chart Review – Lessons Learned Chart reviews are a useful tool for verifying data accuracy and learning about risk factors EBC data quality is a cause for some concern Hospital nursery staff are very unaware of which stigmata and syndromes are associated with hearing loss Risk indicators are not always clear even in the medical record. Ex: Unclear family hx (conflicting notes in med. record, IVF w/ donor egg), congenital syphilis dx. Record review of birth chart only will not identify risk factors not evident at birth

21. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 New Jersey Statistics – 3Q 2004 Inpatient Screening Outpatient Follow-up for Infants Missing or Referring on Inpatient Screening Dis- charged Babies Dis- charged & Screened Dis- charged & Failed Screen- ing Dis- charge d & Any Risk Factor Discharged & Risk Factor for Progressive or Late- Onset Hearing Loss Number of Babies Requir- ing Follow-Up % with Follow- Up Visit Reported % Report- ed Lost to Follow- Up % Needing Follow- Up NJ Total - 200211041997.1%4.5%6.9%2.7%800433.5%7.6%58.9% NJ Total - 200311186798.1%4.6%6.7%2.7%720045.9%7.7%46.4% NJ Total 1st Q 20042658898.8%4.3%7.1%3.0%143650.1%8.8%41.1% NJ Total 2nd Q 20042790798.9%4.5%6.6%2.6%155548.7%6.0%45.1% NJ Total 3rd Q 20042852198.6%4.3%6.2%2.6%158230.7%2.4%66.9%

22. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 Impact of Site Visits

23. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 Impact of Site Visits

24. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 Impact of Site Visits Significant decrease in follow-up rates No significant change Significant increase in follow-up rates Cohort 1131 Cohort 25156 Cohort 31228

25. NJ Dept. of Health & Senior Services, National EHDI Conference - Atlanta GA, March 3, 2005 Acknowledgements Statistical assistance for this presentation was provided by Charles E. Denk, PhD, Research Scientist, NJDHSS, MCH Epidemiology program