1. Improving Newborn Hearing Screening and Follow-up presented at the Early Hearing Detection and Intervention: Making the Connections Greensboro, North Carolina by Karl R. White National Center for Hearing Assessment and Management www.infanthearing.org April 8, 2005

2. Who is in charge? Improving Newborn Hearing Screening and Follow-up

3. Who is in charge? Communicating with parents #1 Improving Newborn Hearing Screening and Follow-up

4. What every parent needs to know

5. Who is in charge? Communicating with parents Physician education Improving Newborn Hearing Screening and Follow-up

6. Babies Diagnosed with Hearing Loss Are Not Referred to Some Medical Specialists As Often As Desired Always or Often Ophthalmological evaluation0.6% Genetic evaluation8.7% Otolaryngological evaluation74.4% Assume a newborn for whom you are caring is diagnosed with a moderate to profound bilateral hearing loss. If no other indications are present, would you refer the baby for a(n): Responses of 1375 physicians in 21 states

7. When can an infant be fit with hearing aids? Percentage of Physicians

8. American Academy of Pediatrics

9. Who is in charge? Communicating with parents Physician education Selecting and training screeners –Who can be a good screener? –Dont train more than you need –Regular supervision Improving Newborn Hearing Screening and Follow-up

10. Who is in charge? Communicating with parents Physician education Selecting and training screeners Keeping refer rates low Improving Newborn Hearing Screening and Follow-up

11. Keeping Refer Rates Low Schedule screening when babies are in best behavioral state Make a second effort prior to discharge Minimize noise and confusion Regular supervision and assistance Swaddling Back-up equipment and supplies

12. Who is in charge? Communicating with parents Physician education Selecting and training screeners Keeping refer rates low What is your target? Improving Newborn Hearing Screening and Follow-up

13. AABR Screening Comprehensive Hearing Evaluation Before 6 Months of Age Fail Pass Discharge OAE Screening Prior to Hospital Discharge Does a 2-stage (OAE/AABR) newborn hearing screening protocol miss babies with mild hearing loss? Study Sample Comprehensive Audiological Assessment at 8-12 months of age Comparison Group

14. Research Procedures Nationally representative sites with successful screening programs recruited From a birth cohort of 86,634 newborns who were screened for hearing, 1524 parents of newborns who failed OAE and passed AABR were enrolled –Baby and family data collected –Contact every 2 months Follow-up diagnostic assessment at 8-12 months of age –Visual Reinforcement Audiometry, OAE, and Tymp –Responses measured to 15 dB at 1K, 2K, and 4K –Data were collected for 973 children (64%)

15. How Many Additional Babies with Permanent Hearing Loss were Identified? Comparison Group (Fail OAE/ Fail AABR) Study Group (Fail OAE/ Pass AABR) Total Number of Babies 15821179 Prevalence per 1,000 1.82.55*2.37 Represents 23% of all babies with PHL in birth cohort *Adjusted for proportion of OAE fails that enrolled

16. Degree of Hearing Loss* in Study and Comparison Group Babies 80.3% 28.6%

17. Conclusions A substantial number of babies with permanent hearing loss at 9 months of age will pass A-ABR during newborn screening Best estimate is.55 per thousand or 23% of all babies with permanent hearing loss Mostly mild sensorineural hearing loss Impossible to determine whether this is congenital or late-onset About 45% of these would be identified if all babies with risk factors or contralateral refer ears were followed, but this may not be practical

18. Screening for permanent hearing loss should extend into early childhood (e.g. physicians offices, early childhood programs) Emphasize to families and physicians that passing hospital-based hearing screening does not eliminate the need to vigilantly monitor language development. Screening program administrators should ensure that the stimulus levels of equipment used are consistent with the degree of hearing loss they want to identify The relative advantages and disadvantages of the two- stage (OAE/AABR) protocol need to be carefully considered for individual circumstances Recommendations

19. Who is in charge? Communicating with parents Physician education Selecting and training screeners Keeping refer rates low What is your target? Tracking and Follow-up Improving Newborn Hearing Screening and Follow-up

20. Tracking and Data Management Screening Research Diagnosis Intervention Program Improvement and Quality Assurance

21. Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs Location of Program (Time) Cohort Size Primary Screening Technique Prevalence Per 1000 of Hearing Loss* % of Refers Lost to Follow-up New Jersey Barsky-Firkser & Sun, 1997 (1/93 - 12/95) 15,749ABR 3.3041% New York Prieve, 2000 (1/96 - 12/96) 27,938OAE & AABR 1.9623% Colorado Mehl & Thomson, 1998 (1/92 - 12/96) 41,976AABR 2.5652% Texas Finitzo, et al., 1998 (1/94 - 6/97) 54,228OAE 2.1531% Hawaii Johnson, et. al, 1997 (1/94 - 6/97) 9,605OAE 4.152%

22. Tracking "Refers" is a Major Challenge (continued) Initial Rescreen Births Screened Refer Rescreen Refer Rhode Island53,12152,659 5,397 4,575 677 (1/93 - 12/96) (99%) (10%) (85%) (1.3%) Hawaii10,5849,605 1,204 991 121 (1/96 - 12/96) (91%) (12%) (82%) (1.3%) New York28,95127,938 1,953 1,040 245 (1/96-12/96) (96.5%) (7%) (53%) (0.8%)

24. Who is in charge? Communicating with parents Physician education Selecting and training screeners Keeping refer rates low What is your target? Tracking and Follow-up Continuous Screening Improving Newborn Hearing Screening and Follow-up

25. MCHBs National Agenda for Children with Special Health Care Needs Core outcome #3: All children will be screened early and continuously for special health care needs

26. Continuous screening opportunities As EHDIs increasingly turn their attentions to enhancing follow-up and continuous screening, they are identifying important community partners – one of them is Head Start

27. Status of Head Start Hearing Screening Practices Head Starts Performance Standards reflect a long- standing commitment to hearing screening: All children are to receive a hearing screen within 45 days of enrollment; however: Most Grantees rely on subjective screening methods such as hand clapping, bell ringing, and parent questionnaires to screen children 0 – 3 years of age Most Grantees unaware that Otoacoustic Emissions (OAE) technology, used widely in newborn hearing screening programs, can also be used successfully in early childhood settings.

28. Pilot program in WA, OR, and UT from 2001-2004 69 Migrant, American Indian, and Early Head Start sites trained in WA, OR, and UT 3486 children screened The Hearing Head Start Project

29. OAE Screening/Referral Outcomes 78 children identified with a hearing loss or disorder: 6 permanent hearing loss 63 serious otitis media requiring treatment 2 treated for occluded Pressure Equalization tubes 7 treated for excessive ear wax

30. www.infanthearing.org

31. www. babyhearing.org