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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

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Risk Factors for Late Onset Hearing Loss in Children

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  1. 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

  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 child’s primary care physician and parents.

  3. Why track risk factors? 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 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

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

  7. 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.

  8. 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%

  9. 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

  10. 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

  11. 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.

  12. Infants with Hearing Loss who Passed Newborn Hearing Screening (N=31) 42% 35% 19% 3% Final Screening

  13. Test Type for All Infants 35% 28% 25% 12%

  14. Degree of Hearing Loss as a Function of Screening Protocol

  15. 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.

  16. 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

  17. Inconsistencies in Risk Factors for Children with Hearing Loss (N=482)

  18. Inconsistencies in Risk Factors for Children with Hearing Loss (N=482)

  19. 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

  20. 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

  21. 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

  22. 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

  23. Specific Aim 3 Evaluate the compliance with the JCIH 2000 recommendations for monitoring and assessment by the child’s primary care physician and parents.

  24. Number of Patients born in 2005-2006 for whom a risk factor letter was sent to PCP = 2984

  25. 2005-2006 1.3% 1.3% 6% 6% 68% 57%

  26. 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

  27. Physician Perspective on JCIH (2000) Recommendations for Follow-up of Infants with Risk Factors

  28. Accuracy in Reporting Risk Factors by Birth Hospitalas Judged by PCP

  29. Importance of Each Risk Factor in Identifying Hearing Loss as Judged by PCP

  30. Action(s) by PCP receiving a letter from DOH about infant with risk factors for late onset and progressive hearing loss 86% 77% 63%

  31. Timeframe of Referral by PCPs (N=139) Indicating they Refer to an Audiologist 48% 28% 12% 12% 4%

  32. 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%)

  33. 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

  34. 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

  35. 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.

  36. 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

  37. NICU > 48 hours Incidence (%) Cone-Wesson et al., 2000

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