Presentation on theme: "National Center for Hearing Assessment and Management"— Presentation transcript:
1National Center for Hearing Assessment and Management The Status of Early Hearing Detection and Intervention in the United StatesKaren DittyNational Center for Hearing Assessment and ManagementUtah State University
2Number of Hospitals Doing Universal Newborn Hearing Screening Number of Programs
3Percentage of Births Screened for Hearing Before Discharge Number of Programs
4States with Legislative Mandates Related to Universal Newborn Hearing ScreeningStatus of UNHS Legislative MandatesStates with mandatesNo mandate, but statewideprogramsNo mandate
5Percentage of Newborns Screened for Hearing Loss in the United States 3Percentage of Newborns Screened for Hearing Loss in the United States(Dec 2001).Percentage of BirthsScreened.90%+%%1 - 20%
6Why is Implementation of Newborn Hearing Screening Accelerating? Improved ScreeningTechniques/Equipment
7Acceptance By Policy Makers National Institutes of HealthAmerican Academy of PediatricsMaternal and Child Health BureauCenters for Disease Control & PreventionJoint Committee on Infant HearingAmerican Academy of AudiologyAmerican Speech-Language-Hearing AssociationNational Association of the Deaf
8Why is Implementation of Newborn Hearing Screening Accelerating? Improved ScreeningTechniques/EquipmentAcceptance byIncreased Number ofPolicy MakersSuccessful ProgramsPublicAwareness/Demand
9Why is Early Identification of Hearing Loss so Important? Hearing loss occurs more frequently than any other birth defect.
10Rate Per 1,000 of Permanent Childhood Hearing Loss in UNHS Programs Sample PrevalenceSite Size Per 1000Rhode Island (3/93 - 6/94) 16,Colorado (1/ /96) 41,New York (1/ /97) 69,Texas (1/94 - 6/97) ,Hawaii (1/ /96) 9,New Jersey (1/ /95) 15,
11Incidence per 10,000 of Congenital Defects/Diseases
12Why is Early Identification of Hearing Loss so Important? Hearing occurs more frequently than any other birth defect.Undetected hearing loss has serious negative consequences.
13Reading Comprehension Scores of Hearing and Deaf Students Grade EquivalentsAge in YearsSchildroth, A. N., & Karchmer, M. A. (1986). Deaf children in America, San Diego: College Hill Press.
14Effects of Unilateral Hearing Loss Normal HearingUnilateral Hearing LossKeller & Bundy (1980)Math(n = 26; age = 12 yrs)LanguagePeterson (1981)Math(n = 48; age = 7.5 yrs)LanguageBess & Thorpe (1984)Social(n = 50; age = 10 yrs)MathBlair, Peterson & Viehweg (1985)(n = 16; age = 7.5 yrs)LanguageMathCulbertson & Gilbert (1986)(n = 50; age = 10 yrs)LanguageSocialAverage Results0th10th20th30th40th50th60thMath = 30th percentilePercentile RankLanguage = 25th percentileSocial = 32nd percentile
15Effects of Mild Fluctuating Conductive Hearing Loss Teele, et al., 1990194 children followed prospectively from 0-7 years.Days child had otitis media between 0-3 years assessed during normal visits to physician.Data on intellectual ability, school achievement, and language competency individuallymeasured at 7 years by "blind" diagnosticians.Results for children with less than 30 days OME were compared to children with more than130 days adjusted for confounding variables.Effect Size forOutcome Measure Less vs. More OMEWISC-R Full Scale.62Metropolitan Achievement TestMath.48Reading.37Goldman Fristoe Articulation.43Teele, D.W., Klein, J.O., Chase, C., Menyuk, P., Rosner, B.A., and the Greater Boston Otitis media Study Group (1990).Otitis media in infancy and intellectual ability, school achievement, speech, and language at age 7 years.The Journalof Infectious Diseases,162,
16Why is Early Identification of Hearing Loss so Important? Hearing loss occurs more frequently than any other birth defect.Undetected hearing loss has serious negative consequences.There are dramatic benefits associated with early identification of hearing loss.
17Yoshinaga-Itano, et al., 1996Compared language abilities of hearing-impaired children identifiedbefore 6 months of age (n = 46) with similar children identified after 6months of age (n = 63).All children had bilateral hearing loss ranging from mild to profound,and normally-hearing parents.Language abilities measured by parent report using the MinnesotaChild Development Inventory (expressive and comprehension scales)and the MacArthur Communicative Developmental Inventories(vocabulary).Cross-sectional assessment with children categorized in 4 differentage groups.Yoshinaga-Itano, C., Sedey, A., Apuzzo, M., Carey, A., Day, D., & Coulter, D. (July 1996).The effect of earlyidentification on the development of deaf and hard-of-hearing infants and toddlers. Paper presented at theJoint Committee on Infant Hearing Meeting, Austin, TX.
18Expressive Language Scores for Hearing Impaired Children Identified Before and After 6 Months of Age353025Language Age in Months201510Identified BEFORE 6 Months5Identified AFTER 6 Months13-18 mos19-24 mos25-30 mos31-36 mos(n = 15/8)(n = 12/16)(n = 11/20)(n = 8/19)Chronological Age in Months
19Good work, but I think we might need just a little more detail right Implementing Effective EHDI ProgramsoutThen amiracleoccursStartGood work,but I think we mightneed just a littlemore detail righthere.
20Is the Glass Half Empty or Half Full? More than 21/2 million babies are screened every year prior to dischargeLess than 30 hospitals with UNHS in 1993; compared with more than 2400 today36 states have passed legislation related to newborn hearing screeningOr half empty?1,400+ hospitals are not yet screening for hearing lossMore than a million babies are NOT screened every year prior to dischargeExisting legislation is of variable qualityFollow-up rates are often alarmingly lowSome hospitals have unacceptably high referral rates
21Status of EHDI Programs in the United States Universal Newborn Hearing ScreeningEffective Tracking and Follow-up as a part of the Public Health SystemAppropriate and Timely Diagnosis of the Hearing LossPrompt Enrollment in Appropriate Early InterventionA Medical Home for all NewbornsCulturally Competent Family Support
22Status of EHDI Programs in the US: Universal Newborn Hearing Screening With 2/3 all babies screened prior to discharge, newborn hearing screening is becoming the standard of careThere are hundreds of excellent programs regardless of the type of equipment or protocol usedMany programs are still struggling with high refer rates and poor follow-up
24Protocols Used in Universal Newborn Hearing Screening Programs Screening ProceduresPercent of newbornsscreenedBefore Hospital DischargeAfter Hospital DischargeOAE11.6%ABR23.3%OAE/ABR6.7%OAEOAE21.4%OAEABR4.2%ABROAE2.8%ABRABR23.2%6.4%OAE/ABROAE/ABROther protocol0.3%
25Status of EHDI Programs in the United States Universal Newborn Hearing ScreeningEffective Tracking and Follow-up as a part of the Public Health System
26Purposes of an EHDI Data System ResearchProgram Improvementand Quality AssuranceScreeningDiagnosisInterventionMedical, Audiological andEducational
27Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs Sample Prevalence % of RefersSite Size Per with DiagnosisRhode Island (3/93 - 6/94) 16, %Colorado (1/ /96) 41, %New York (1/ /96) 27, %Utah (7/ /94) , %Hawaii (1/ /96) 9, %
28Tracking "Refers" is a Major Challenge (continued)Initial RescreenBirths Screened Refer Rescreen ReferRhode Island53,12152,6595,3974,575677(1/ /96)(99%)(10%)(85%)(1.3%)Hawaii10,5849,6051,204991121(1/ /96)(91%)(12%)(82%)(1.3%)New York28,95127,9381,9531,040245(1/96-12/96)(96.5%)(7%)(53%)(0.8%)
29Tracking and Data Management 75% of states report at least some hospitals submit data to state about results of their screening programFor those getting data, information was submitted for 62% of the births in last quarter of 200133% of submissions do not include identifying information --- making follow-up by state impossibleOnly 17% of states currently have any kind of linkage with other data systems (eg, Vital Statistics, metabolic, EI, Immunizations)
30Status of EHDI Programs in the United States Universal Newborn Hearing ScreeningEffective Tracking and Follow-up as a part of the Public Health SystemAppropriate and Timely Diagnosis of the Hearing Loss
31Audiological Diagnosis Equipment and techniques for diagnosis of hearing loss in infants continues to improveSevere shortages in experienced pediatric audiologists delays confirmation of hearing lossState coordinators estimate 56.1% “receive diagnostic evaluations by 3 months of age
32Availability of Pediatric Audiolgists Number of statesPediatric Audiolgists per 10,000 Births per year
33Confirmation of Permanent Hearing Loss 35Coplan (1987)19Eissman et al. (1987)30Gustason (1987)30Meadow-Orlans (1987)24Yoshinago-Itano (1995)25Stein et al. (1990)31Mace et al. (1991)56O'Neil (1996)3Johnson et al. (1997)*3Vohr et al. (1998)*10203040506070Average Age in Months
34Hawai'i EHDI Progress Age of Identification and Intervention 60 50 40 Age in Months302010pre1992199319941995199619971998YearData from Hawai’I Zero to Three Project
35Status of EHDI Programs in the United States Universal Newborn Hearing ScreeningEffective Tracking and Follow-up as a part of the Public Health SystemAppropriate and Timely Diagnosis of the Hearing LossPrompt Enrollment in Appropriate Early Intervention
36Early Intervention Part C of IDEA is an under used resource 96% of state coordinators know who the Part C coordinator is74% of states have someone on the IDEA Interagency Coordinating Council with experience / expertise in hearing loss with infantsState Coordinators estimate:53% of infants with hearing loss are enrolled in EI programs before 6 months of age31% of states have adequate range of choices for type of EI programs
37Percentage of State Coordinators Who Rate Early Intervention Programs in the State as Good or ExcellentFor children with:bilateral severe/profound losses %bilateral mild/moderate losses %unilateral losses %
38Status of EHDI Programs in the United States Universal Newborn Hearing ScreeningEffective Tracking and Follow-up as a part of the Public Health SystemAppropriate and Timely Diagnosis of the Hearing LossPrompt Enrollment in Appropriate Early InterventionA Medical Home for all Newborns
39What Is a Medical Home?A primary care physician provides care which is:AccessibleFamily-centeredComprehensiveContinuousCoordinatedCompassionateCulturally effective
40AAP Task Force on Newborn Infant Hearing Endorses implementation of universal newborn hearing screeningDefines standards for:ScreeningTracking & Follow-upIdentification & InterventionProgram EvaluationEncourages AAP Chapters to provide leadership in developing statewide programs
41EHDI and the Medical Home Birthing HospitalAudiologyParent GroupsMental HealthPrimary ProviderChild/FamilyENT3rd Party PayersDeaf CommunityEarly Intervention ProgramsGeneticsServices for Hearing Loss
42State Coordinator’s Ratings of Obstacles to Effective EHDI Programs Serious or ExtremelySerious ObstacleUnwillingness of third-party payersto reimburse for hearing screening %Physicians don’t know enough aboutHearing screening, diagnosis, and intervention %Shortage of qualified pediatric audiologists 49%
43Status of EHDI Programs in the United States Universal Newborn Hearing ScreeningEffective Tracking and Follow-up as a part of the Public Health SystemAppropriate and Timely Diagnosis of the Hearing LossPrompt Enrollment in Appropriate Early InterventionA Medical Home for all NewbornsCulturally Competent Family Support
44EHDI Materials Available from “State” Programs (n=54)General Screening Brochure statesWhat To Do If Your Baby Refers statesWhat To Do If Your Baby has a Hearing Loss 41 statesGuidelines for Audiologic Diagnostic Evaluations 30 statesList of Qualified Pediatric Audiologists 39 statesBrochure about Genetics of Hearing Loss 7 statesFair or Excellent Availability of Materials inother Languages states
45Information Wanted vs. Received by Parents at Hearing Loss ConfirmationMartin, George, O'Neal, & Daly (1987); *Sweetow & Barrager (1980)Degree of lossAuditory systemAmplificationEducational optionsSpeech/Lang devEtiologyHome activities*Written Information*Financial Support*Emotional Support*Parent Contacts*Referral Sources20406080100WantedReceived