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The Status of Early Hearing Detection and Intervention in the United States Karen Ditty National Center for Hearing Assessment and Management Utah State.

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Presentation on theme: "The Status of Early Hearing Detection and Intervention in the United States Karen Ditty National Center for Hearing Assessment and Management Utah State."— Presentation transcript:

1 The Status of Early Hearing Detection and Intervention in the United States Karen Ditty National Center for Hearing Assessment and Management Utah State University

2 Number of Hospitals Doing Universal Newborn Hearing Screening Number of Programs

3 Percentage of Births Screened for Hearing Before Discharge Number of Programs

4 States with Legislative Mandates Related to Universal Newborn Hearing Screening Status of UNHS Legislative Mandates States with mandates No mandate No mandate, but statewide programs

5 . Percentage of Newborns Screened for Hearing Loss in the United States (Dec 2001). Percentage of Births Screened 90% % % %

6 Improved Screening Techniques/Equipment Why is Implementation of Newborn Hearing Screening Accelerating?

7 Acceptance By Policy Makers National Institutes of Health American Academy of Pediatrics Maternal and Child Health Bureau Centers for Disease Control & Prevention Joint Committee on Infant Hearing American Academy of Audiology American Speech-Language-Hearing Association National Association of the Deaf

8 Improved Screening Techniques/Equipment Acceptance by Policy Makers Why is Implementation of Newborn Hearing Screening Accelerating? Increased Number of Successful Programs Public Awareness/Demand

9 Why is Early Identification of Hearing Loss so Important? Hearing loss occurs more frequently than any other birth defect.

10 Rate Per 1,000 of Permanent Childhood Hearing Loss in UNHS Programs Sample Prevalence Site Size Per 1000 Rhode Island (3/93 - 6/94) 16, Colorado (1/ /96) 41, New York (1/ /97) 69, Texas (1/94 - 6/97) 52, Hawaii (1/ /96) 9, New Jersey (1/ /95) 15,

11 Incidence per 10,000 of Congenital Defects/Diseases

12 Why is Early Identification of Hearing Loss so Important? Hearing occurs more frequently than any other birth defect. Undetected hearing loss has serious negative consequences.

13 Reading Comprehension Scores of Hearing and Deaf Students Age in Years Schildroth, A. N., & Karchmer, M. A. (1986). Deaf children in America, San Diego: College Hill Press. Grade Equivalents

14 Effects of Unilateral Hearing Loss Math Language Math Language Social Math Language Math Language Social 0th10th20th30th40th50th60th Percentile Rank Normal HearingUnilateral Hearing Loss Keller & Bundy (1980) (n = 26; age = 12 yrs) Peterson (1981) (n = 48; age = 7.5 yrs) Bess & Thorpe (1984) (n = 50; age = 10 yrs) Blair, Peterson & Viehweg (1985) (n = 16; age = 7.5 yrs) Culbertson & Gilbert (1986) (n = 50; age = 10 yrs) Average Results Math = 30th percentile Language = 25th percentile Social = 32nd percentile

15 Effects of Mild Fluctuating Conductive Hearing Loss Teele, et al., 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 individually measured at 7 years by "blind" diagnosticians. Results for children with less than 30 days OME were compared to children with more than 130 days adjusted for confounding variables. Effect Size for Outcome Measure Less vs. More OME WISC-R Full Scale.62 Metropolitan Achievement Test Math.48 Reading.37 Goldman Fristoe Articulation.43 Teele, 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 Journal of Infectious Diseases,162,

16 Why 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.

17 Yoshinaga-Itano, et al., 1996 Compared language abilities of hearing-impaired children identified before 6 months of age (n = 46) with similar children identified after 6 months 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 Minnesota Child Development Inventory (expressive and comprehension scales) and the MacArthur Communicative Developmental Inventories (vocabulary). Cross-sectional assessment with children categorized in 4 different age groups. Yoshinaga-Itano, C., Sedey, A., Apuzzo, M., Carey, A., Day, D., & Coulter, D. (July 1996).The effect of early identification on the development of deaf and hard-of-hearing infants and toddlers. Paper presented at the Joint Committee on Infant Hearing Meeting, Austin, TX.

18 13-18 mos (n = 15/8) mos (n = 12/16) mos (n = 11/20) mos (n = 8/19) Identified BEFORE 6 Months Identified AFTER 6 Months Expressive Language Scores for Hearing Impaired Children Identified Before and After 6 Months of Age Chronological Age in Months Language Age in Months

19 Good work, but I think we might need just a little more detail right here. Implementing Effective EHDI Programs Then a miracle occurs out Start

20 Half full? More than 21/2 million babies are screened every year prior to discharge Less than 30 hospitals with UNHS in 1993; compared with more than 2400 today 36 states have passed legislation related to newborn hearing screening Or half empty? 1,400+ hospitals are not yet screening for hearing loss More than a million babies are NOT screened every year prior to discharge Existing legislation is of variable quality Follow-up rates are often alarmingly low Some hospitals have unacceptably high referral rates Is the Glass Half Empty or Half Full?

21 Status of EHDI Programs in the United States Universal Newborn Hearing Screening Effective Tracking and Follow-up as a part of the Public Health System Appropriate and Timely Diagnosis of the Hearing Loss Prompt Enrollment in Appropriate Early Intervention A Medical Home for all Newborns Culturally Competent Family Support

22 Status 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 care There are hundreds of excellent programs regardless of the type of equipment or protocol used Many programs are still struggling with high refer rates and poor follow-up

23 Typical UNHS Screening Protocols (example for 1,000 newborns) Hearing Loss=3 Normal Hearing=37 Diagnosis n=40 Inpatient Screening Fail=40 Pass=960 1 Stage AABR Hearing Loss=3 Normal Hearing=7 Inpatient Screening Pass=920 Fail=80 Outpatient Screening n=80 Diagnosis n=10 Pass=70 Fail=10 2 Stage OAE Diagnosis n=20 Inpatient Screening Pass=980 Fail=20 Hearing Loss=3 Normal Hearing=17 1 Stage OAE / AABR

24 Protocols Used in Universal Newborn Hearing Screening Programs Screening Procedures Before Hospital Discharge After Hospital Discharge Percent of newborns screened OAE % ABR % OAE/ABR % OAE 21.4% OAEABR4.2% ABROAE2.8% ABR 23.2% OAE/ABR 6.4% Other protocol %

25 Status of EHDI Programs in the United States Universal Newborn Hearing Screening Effective Tracking and Follow-up as a part of the Public Health System

26 Purposes of an EHDI Data System Screening Research DiagnosisIntervention Medical, Audiological and Educational Program Improvement and Quality Assurance

27 Rate Per 1000 of Permanent Childhood Hearing Loss in UNHS Programs Sample Prevalence % of Refers Site Size Per 1000 with Diagnosis Rhode Island (3/93 - 6/94) 16, % Colorado (1/ /96) 41, % New York (1/ /96) 27, % Utah (7/ /94) 4, % Hawaii (1/ /96) 9, %

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

29 Tracking and Data Management 75% of states report at least some hospitals submit data to state about results of their screening program For those getting data, information was submitted for 62% of the births in last quarter of % of submissions do not include identifying information --- making follow-up by state impossible Only 17% of states currently have any kind of linkage with other data systems (eg, Vital Statistics, metabolic, EI, Immunizations)

30 Status of EHDI Programs in the United States Universal Newborn Hearing Screening Effective Tracking and Follow-up as a part of the Public Health System Appropriate and Timely Diagnosis of the Hearing Loss

31 Audiological Diagnosis Equipment and techniques for diagnosis of hearing loss in infants continues to improve Severe shortages in experienced pediatric audiologists delays confirmation of hearing loss State coordinators estimate 56.1% receive diagnostic evaluations by 3 months of age

32 Availability of Pediatric Audiolgists Number of states Pediatric Audiolgists per 10,000 Births per year

33 Average Age in Months Coplan (1987) Eissman et al. (1987) Gustason (1987) Meadow-Orlans (1987) Yoshinago-Itano (1995) Stein et al. (1990) Mace et al. (1991) O'Neil (1996) Johnson et al. (1997)* Vohr et al. (1998)* Confirmation of Permanent Hearing Loss

34 Hawai'i EHDI Progress Age of Identification and Intervention Data from HawaiI Zero to Three Project pre Year Age in Months IdentificationIntervention

35 Status of EHDI Programs in the United States Universal Newborn Hearing Screening Effective Tracking and Follow-up as a part of the Public Health System Appropriate and Timely Diagnosis of the Hearing Loss Prompt Enrollment in Appropriate Early Intervention

36 Early Intervention Part C of IDEA is an under used resource 96% of state coordinators know who the Part C coordinator is 74% of states have someone on the IDEA Interagency Coordinating Council with experience / expertise in hearing loss with infants State Coordinators estimate: – 53% of infants with hearing loss are enrolled in EI programs before 6 months of age –31% of states have adequate range of choices for type of EI programs

37 Percentage of State Coordinators Who Rate Early Intervention Programs in the State as Good or Excellent For children with: bilateral severe/profound losses 63% bilateral mild/moderate losses 56% unilateral losses46%

38 Status of EHDI Programs in the United States Universal Newborn Hearing Screening Effective Tracking and Follow-up as a part of the Public Health System Appropriate and Timely Diagnosis of the Hearing Loss Prompt Enrollment in Appropriate Early Intervention A Medical Home for all Newborns

39 What Is a Medical Home? A primary care physician provides care which is: Accessible Family-centered Comprehensive Continuous Coordinated Compassionate Culturally effective

40 AAP Task Force on Newborn Infant Hearing Endorses implementation of universal newborn hearing screening Defines standards for: –Screening –Tracking & Follow-up –Identification & Intervention –Program Evaluation Encourages AAP Chapters to provide leadership in developing statewide programs

41 EHDI and the Medical Home Parent Groups Mental Health Birthing Hospital Audiology Primary Provider Child/Family ENT Genetics Early Intervention Programs 3rd Party Payers Deaf Community Services for Hearing Loss

42 State Coordinators Ratings of Obstacles to Effective EHDI Programs Serious or Extremely Serious Obstacle Unwillingness of third-party payers to reimburse for hearing screening 28% Physicians dont know enough about Hearing screening, diagnosis, and intervention 41% Shortage of qualified pediatric audiologists49%

43 Status of EHDI Programs in the United States Universal Newborn Hearing Screening Effective Tracking and Follow-up as a part of the Public Health System Appropriate and Timely Diagnosis of the Hearing Loss Prompt Enrollment in Appropriate Early Intervention A Medical Home for all Newborns Culturally Competent Family Support

44 EHDI Materials Available from State Programs (n=54) General Screening Brochure 39 states What To Do If Your Baby Refers 35 states What To Do If Your Baby has a Hearing Loss41 states Guidelines for Audiologic Diagnostic Evaluations 30 states List of Qualified Pediatric Audiologists39 states Brochure about Genetics of Hearing Loss 7 states Fair or Excellent Availability of Materials in other Languages 34 states

45 Wanted Received


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