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Risk Factors for Late Onset Hearing Loss in Children

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Title: Risk Factors for Late Onset Hearing Loss in Children


1
Risk Factors for Late Onset Hearing Loss in
Children
  • Susan Norton
  • Esther Ehrmann
  • Childrens Hospital Regional Medical Center
  • Richard Folsom
  • University of Washington
  • In collaboration with Washington State DOH EHDDI
    Program
  • Funded by Association of University Centers on
    Disability (AUCD) - RTOI-2004-01-05
  • October 1, 2004 September 30, 2007

2
Specific Objectives
  • Evaluate the efficacy of the JCIH 2000
    recommended neonatal risk indicators for
    progressive and/or late onset hearing loss.
  • Ensure the accuracy of reporting of the JCIH 2000
    neonatal risk indicators for progressive and/or
    late onset hearing loss by hospitals by
    implementing quality control measures.
  • Evaluate the compliance with the JCIH 2000
    recommendations for monitoring and assessment by
    the childs primary care physician and parents.

3
Why track risk factors?
van Naardeen et al (1999) van Naardeen et al (1999) Galluduet Research Institute (1994)
Birth Age 3 Years Age 10 Years Age 3-17 Years
0.3 0.67 1.38 1.8
3/1000 7/1000 14/1000 18/1000
  • Normal hearing at birth does not rule out a
    delayed onset hearing loss later.

4
Neonatal (birth 28 days)risk indicators for
late onset hearing loss
  • An illness or condition requiring admission of 48
    hours or greater to a NICU.
  • Stigmata or other findings associated with a
    syndrome known to include a sensorineural or
    conductive hearing loss.
  • Family history of permanent childhood
    sensorineural hearing loss.
  • Craniofacial anomalies, including those with
    morphologic abnormalities of the pinna and ear
    canal.
  • In-utero infections such as cytomegalovirus,
    herpes, toxoplasmosis, or rubella.
  • Joint Committee on Infant Hearing, 2000

5
Data collection and analysis EHDDI Tracking
Surveillance Database
  • Washington state Department of Health (DOH)
    tracks infants with risk factors for hearing loss
  • Hospitals report screening risk factor
    information to Department of Health (DOH)
  • DOH follows up with PCP for babies referred,
    missed, and babies who passed but are reported to
    have 1 or more of 4 specified risk factors for
    late onset hearing loss.
  • DOH does not follow infants who pass newborn
    hearing screening whose only risk factor is NICU
    stay gt 48 hours

6
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7

8
Phase II Data collection and analysis
  • Audiologists report detailed hearing health
    information and history for 0-3 year olds seen
    for diagnostic hearing evaluations

9
Specific Aim 1
  • Evaluate the efficacy of the Joint Committee on
    Infant Hearing 2000 recommended neonatal risk
    indicators for progressive and/or late onset
    hearing loss.

10
Risk factors among all newborns in EHDDI
DatabaseTotal screened 147,431Infants with
one or more risk factors 13,251 (9)
74
DOH sends Risk Factor Letter to PCP
20
4
2
3
11
Risk Factor Status of infants who passed their
newborn hearing screen later diagnosed with
permanent hearing loss (N31)
52 had one or more risk factor 48 had no risk
factors
12
Are these misses or late onset/progressive
hearing loss?
  • Possible Misses ?
  • Screening until a pass is obtained
  • Screening tool insensitive to degree and/or
    configuration of hearing loss
  • Recording error by screener

13
Late onset Progressive Hearing Loss ?
  • At least five of the babies failed their initial
    hearing screening and then passed a
    re-screening
  • Multiple inpatient screens until a pass
  • Failed AABR as an inpatient and passed DPOAE as
    an outpatient (2 cases)
  • Failed TEOAE passed outpatient AABR re-screen
  • Failed RE DPOAE, passed LE. Then passed RE,
    failed LE. Counted as a pass bilaterally.

14
Infants with Hearing Loss who Passed Newborn
Hearing Screening (N31)
42
35
19
3
Final Screening
15
Test Type for All Infants
35
28
25
12
16
Degree of Hearing Loss as a Function of Screening
Protocol
ABR DPOAE TEOAE Unknown
Mild 6 6 3
Moderate 4 2 1
Severe 2 1
Profound 1
Unknown 1 2 1 1
17
Specific Aim 2
  • Ensure the accuracy of reporting of the Joint
    Committee on Infant Hearing 2000 neonatal risk
    indicators for progressive and/or late onset
    hearing loss by hospitals by implementing quality
    control measures.

18
EHDDI Quality Control Education
  • Esther Ehrmann, project coordinator Wendy
    Harrison, EHDDI coordinator conduct site visits
    to each birthing hospital at least once a year
  • Review risk factors with screeners
  • Review overall screening program
  • Conduct training for programs with high refer
    rates
  • Re-train screeners when needed

19
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20
Inconsistencies in Risk Factors for Children
with Hearing Loss (N482)
21
Inconsistencies in Risk Factors for Children with
Hearing Loss (N482)
Risk Factor Screener Reported Audiologist Reported Any RF in Phase II Audiologist Reported Specific RF in Phase II
NICU gt 48 hours 19.7 9.5 7.5
Syndrome 4.1 2.3 0
Family History 8.1 4.1 3.7
Craniofacial Anomalies 7.7 4.4 4.1
In-Utero Infections 0.8 0.4 0.2
Total 40.5 20.7 15.6
22
Risk Factor Reporting IssuesHospitals
Screeners
  • Disconnect between person filing out the DOH card
    person knowledgeable about risk factors
  • Unclear when to check NICU
  • Checking in utero infection if mother was ill
    anytime during pregnancy
  • Indicating family history of hearing loss if
    history of otitis media

23
Risk Factor Reporting IssuesAudiologists
  • Difficulty getting data into Phase II cant
    justify the time it takes to enter data because
    it does not generate money
  • Inaccurate parent report of medical history

24
2005 Audiologist Workshop
  • JCIH Risk Factors for Late Onset Progressive
    Hearing Loss, Rich Folsom, PhD
  • Genetics of Hearing Loss, Linda Ramsdell, Genetic
    Counselor
  • Medical Evaluation for SNHL, Kathleen C.Y. Sie,
    MD
  • Cytomegalovirus (CMV) Hearing Loss, Ann Melvin,
    MD
  • Babies in the NICU, Jeff Stolz, MD
  • State Tracking Surveillance Phase II
    Accurate Data Collection, Richard Masse, MPH

25
2006 Audiologist Workshop
  • Show me the Data An Update from the Washington
    State Department of Health Karin Neidt, MPH
    Washington State Department of Health
  • Joint Committee on Infant Hearing (JCIH) Update
    Judith E. Widen, Ph.D. Department of Hearing
    Speech University of Kansas Medical Center
  • Cytomegalovirus (CMV) and Hearing Loss Karen B.
    Fowler, DrPH Department of Pediatrics University
    of Alabama at Birmingham
  • Enlarged Vestibular Aqueduct Syndrome (EVAS)
    Kathleen C.Y. Sie, MD Childhood Communication
    Center Childrens Hospital Regional Medical
    Center

26
Specific Aim 3
  • Evaluate the compliance with the JCIH 2000
    recommendations for monitoring and assessment by
    the childs primary care physician and parents.

27
Number of Patients born in 2005-2006 for whom a
risk factor letter was sent to PCP 2984
28
2005-2006
1.3
1.3
6
6
68
57
29
Survey of Physicians
  • 650 physicians sent surveys
  • ? 1 children with risk factors who passed UNHS
  • Surveyed to evaluate attitudes and experiences
    towards follow-up
  • 190 returned survey (29)
  • Majority indicated they share information with
    the parent, monitor hearing at well-child checks,
    and refer to audiology as indicated

30
Physician Perspective on JCIH (2000)
Recommendations for Follow-up of Infants with
Risk Factors
The recommendations are critical to identifying hearing loss early in children. I strongly encourage families to follow-up accordingly. The recommendations are critical to identifying hearing loss early in children. I strongly encourage families to follow-up accordingly. 108 108 57 57
The recommendations are of unproven benefit. I inform families about recommended follow-up and leave it up to them to pursue. The recommendations are of unproven benefit. I inform families about recommended follow-up and leave it up to them to pursue. 50 50 26 26
The recommendations are too burdensome and a poor use of health care resources. The recommendations are too burdensome and a poor use of health care resources. 11 11 6 6
Comments include depends on risk factor (1), all of the above (1), none of the above (2), dont know (1), dont know about these recommendations (1)

31
Accuracy in Reporting Risk Factors by Birth
Hospitalas Judged by PCP
32
Importance of Each Risk Factor in Identifying
Hearing Loss as Judged by PCP
33
Action(s) by PCP receiving a letter from DOH
about infant with risk factors for late onset
and progressive hearing loss
86
77
63
34
Timeframe of Referral by PCPs (N139) Indicating
they Refer to an Audiologist
48
28
12
12
4
35
Survey of PhysiciansThe most common barriers to
follow-up
  • Family compliance (33)
  • Cost of follow-up/insurance coverage (18)
  • Physician compliance (14)
  • Availability of local pediatric audiology (13)
  • Lack of stable medical home (10)
  • Accuracy in reporting risk factors (7)
  • Frequency of Audiology visits too high (5)

36
Survey of Physicians Reasons for poor family
compliance
  • Unspecified - 40
  • No concern about babys hearing 33
  • Too time consuming 25
  • Awareness/Understanding of importance 10
  • Other (lt 4 each) logistics of making/keeping
    appointments transportation, language
    socioeconomic barriers

37
Survey of PhysiciansReasons for poor physician
compliance as judged by physicians
  • Unspecified - 14
  • Awareness/Understanding 38
  • Time/forget 38
  • Other (lt 4) not enough hearing loss to
    warrant lack of accuracy in reporting risk
    factors lack of evidence to support family
    history is a poor indicator

38
Summary
  • Approximately 50 of infants who pass the hearing
    screen and are later identified with hearing loss
    have one or more JCIH 2000 risk factors.
  • There is more work to be done in evaluating
    specifics of risk factors, and whether there are
    other factors involved. (i.e. CMV, EVA, false
    passes)
  • Improvements can be made in accurate
    identification of risk factors by hospital
    screening staff, as well as data reporting by
    audiologists.
  • Physicians see importance of follow-up for
    infants with risk factors. However, there are
    compliance issues for both parents and physicians
    mainly surrounding time, awareness,
    understanding, cost, and availability of services.

39
Collaborators
  • WA State Department of Health EHDDI
  • Karin Neidt, MPH
  • Richard Masse, MPH
  • Deb Lockner-Doyle, MS
  • Childrens Hospital Regional Medical Center
  • Wendy Harrison, MS EHDDI Technical Assistance
    Coordinator
  • Julie Kinsman, AuD candidate
  • University of Washington
  • Marissa Lo, AuD candidate

40
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41
NICU gt 48 hours
Incidence ()
Cone-Wesson et al., 2000
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