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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 Improving Newborn Hearing Screening and Follow-up • Who is in charge? Improving Newborn Hearing Screening and Follow-up • Who is in charge? • Communicating with parents #1 What every parent needs to know Improving Newborn Hearing Screening and Follow-up • Who is in charge? • Communicating with parents • Physician education Babies Diagnosed with Hearing Loss Are Not Referred to Some Medical Specialists As Often As Desired 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): Always or Often Ophthalmological evaluation 0.6% Genetic evaluation 8.7% Otolaryngological evaluation 74.4% Responses of 1375 physicians in 21 states When can an infant be fit with hearing aids? 30 25 # of of Percentage physicians Physicians 20 15 10 5 0 birth 1 mo 2 3 4-5 6 7 to mos mos mos mos 11 mos 12 19+ to mos 18 mos American Academy of Pediatrics Improving Newborn Hearing Screening and Follow-up • Who is in charge? • Communicating with parents • Physician education • Selecting and training screeners – Who can be a good screener? – Don’t train more than you need – Regular supervision Improving Newborn Hearing Screening and Follow-up • Who is in charge? • Communicating with parents • Physician education • Selecting and training screeners • Keeping refer rates low 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 Improving Newborn Hearing Screening and Follow-up • Who is in charge? • Communicating with parents • Physician education • Selecting and training screeners • Keeping refer rates low • What is your target? Does a 2-stage (OAE/AABR) newborn hearing screening protocol miss babies with mild hearing loss? Comparison Group OAE Screening Prior to Hospital Discharge Pass Fail AABR Screening Pass Fail Comprehensive Hearing Evaluation Before 6 Months of Age Study Sample Comprehensive Audiological Assessment at 8-12 months of age Discharge Discharge 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%) How Many Additional Babies with Permanent Hearing Loss were Identified? Comparison Group Study Group (Fail OAE/ Fail AABR) (Fail OAE/ Pass AABR) Number of Babies 158 21 179 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 Total Degree of Hearing Loss* in Study and Comparison Group Babies 28.6% (20-40 dB) (41-70 dB) (>70 dB) Total Infants w/PHL 15 5 1 21 71.4% 23.8% 4.8% 100.0% 31 64 63 158 19.6% 40.5% 46 69 25.7% 38.5% Mild Study Group Comparison Group Total Severe through Moderate Profound 39.6% 100.0% 64 179 35.8% 100.0% As measured in the worse ear 80.3% 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 Recommendations Screening for permanent hearing loss should extend into early childhood (e.g. physician’s 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 twostage (OAE/AABR) protocol need to be carefully considered for individual circumstances Improving Newborn Hearing Screening and Follow-up • 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 Tracking and Data Management Research Program Improvement and Quality Assurance Screening Diagnosis Intervention 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 15,749 ABR 3.30 41% 27,938 OAE & AABR 1.96 23% 41,976 AABR 2.56 52% 54,228 OAE 2.15 31% 9,605 OAE 4.15 2% Barsky-Firkser & Sun, 1997 (1/93 - 12/95) New York Prieve, 2000 (1/96 - 12/96) Colorado Mehl & Thomson, 1998 (1/92 - 12/96) Texas Finitzo, et al., 1998 (1/94 - 6/97) Hawaii Johnson, et. al, 1997 (1/94 - 6/97) Tracking "Refers" is a Major Challenge (continued) Initial Refer Rescreen Rescreen Refer Births Screened Rhode Island (1/93 - 12/96) 53,121 52,659 (99%) 5,397 (10%) 4,575 (85%) 677 (1.3%) Hawaii (1/96 - 12/96) 10,584 9,605 (91%) 1,204 (12%) 991 (82%) 121 (1.3%) New York (1/96-12/96) 28,951 27,938 (96.5%) 1,953 (7%) 1,040 (53%) 245 (0.8%) Improving Newborn Hearing Screening and Follow-up • 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 MCHB’s 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 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 Status of Head Start Hearing Screening Practices Head Start’s “Performance Standards” reflect a longstanding 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. The Hearing Head Start Project 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 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 www.infanthearing.org www.babyhearing.org