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Risk Factors for Late Onset Hearing Loss in Children. Susan Norton Esther Ehrmann Children’s Hospital & Regional Medical Center Richard Folsom University of Washington In collaboration with Washington State DOH EHDDI Program

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risk factors for late onset hearing loss in children

Risk Factors for Late Onset Hearing Loss in Children

Susan Norton

Esther Ehrmann

Children’s 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

specific objectives
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 child’s primary care physician and parents.
why track risk factors
Why track risk factors?

Normal hearing at birth does not rule out a delayed onset hearing loss later.

neonatal birth 28 days risk indicators for late onset hearing loss
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

data collection and analysis ehddi tracking surveillance database
Data collection and analysisEHDDI 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 NICUstay > 48 hours
phase ii data collection and analysis
Phase II Data collection and analysis
  • Audiologists report detailed hearing health information and history for 0-3 year olds seen for diagnostic hearing evaluations
specific aim 1

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.

slide10
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%

slide11

Risk Factor Status of infants

who passed their newborn hearing screen

later diagnosed with permanent hearing loss (N=31)

52% had one or more risk factor

48% had no risk factors

are these misses or late onset progressive hearing loss
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
late onset progressive hearing loss
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.
infants with hearing loss who passed newborn hearing screening n 31
Infants with Hearing Loss who Passed Newborn Hearing Screening (N=31)

42%

35%

19%

3%

Final Screening

specific aim 2

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.

ehddi quality control education
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
risk factor reporting issues hospitals screeners
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
risk factor reporting issues audiologists
Risk Factor Reporting IssuesAudiologists
  • Difficulty getting data into Phase II – can’t justify the time it takes to enter data because it does not generate money
  • Inaccurate parent report of medical history
2005 audiologist workshop
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
2006 audiologist workshop
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 Children’s Hospital & Regional Medical Center
specific aim 3

Specific Aim 3

Evaluate the compliance with the JCIH 2000 recommendations for monitoring and assessment by the child’s primary care physician and parents.

slide28

2005-2006

1.3%

1.3%

6%

6%

68%

57%

survey of physicians
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
physician perspective on jcih 2000 recommendations for follow up of infants with risk factors
Physician Perspective on JCIH (2000) Recommendations for Follow-up of Infants with Risk Factors
slide33
Action(s) by PCP receiving a letter from DOH about infant with risk factors for late onset and progressive hearing loss

86%

77%

63%

survey of physicians t he most common barriers to follow up
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%)
survey of physicians reasons for poor family compliance
Survey of PhysiciansReasons for poor family compliance
  • Unspecified - 40%
  • No concern about baby’s hearing – 33%
  • Too time consuming – 25%
  • Awareness/Understanding of importance – 10%
  • Other (< 4% each) – logistics of making/keeping appointments; transportation, language & socioeconomic barriers
survey of physicians reasons for poor physician compliance as judged by physicians
Survey of PhysiciansReasons for poor physician compliance as judged by physicians
  • Unspecified - 14%
  • Awareness/Understanding – 38%
  • Time/forget – 38%
  • Other (< 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
summary
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.
collaborators
Collaborators

WA State Department of Health EHDDI

  • Karin Neidt, MPH
  • Richard Masse, MPH
  • Deb Lockner-Doyle, MS

Children’s Hospital & Regional Medical Center

  • Wendy Harrison, MS EHDDI Technical Assistance Coordinator
  • Julie Kinsman, AuD candidate

University of Washington

  • Marissa Lo, AuD candidate
slide41

NICU > 48 hours

Incidence (%)

Cone-Wesson et al., 2000

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