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Screening is just the beginning: Follow up Issues in EHDI

Screening is just the beginning: Follow up Issues in EHDI. Karen Munoz, Audiologist Yusnita Weirather, Audiologist. Phases of the process. Screening Diagnostic Intervention. Definition. Lost to follow up:

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Screening is just the beginning: Follow up Issues in EHDI

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  1. Screening is just the beginning: Follow up Issues in EHDI Karen Munoz, Audiologist Yusnita Weirather, Audiologist EHDI 2005 - March

  2. Phases of the process • Screening • Diagnostic • Intervention EHDI 2005 - March

  3. Definition • Lost to follow up: • Screening Phase: Children born at a hospital with newborn hearing screening, but do not return for recommended outpatient screening. • Diagnostic Phase: Children who refer from the screening process but do not receive diagnostic confirmation. • Intervention Phase: Children who are diagnosed with a hearing loss but do not receive intervention • The earlier the identification of deafness or hearing loss, the sooner the child that will benefit from strategies to help him or her learn to communicate. (NIDCD) EHDI 2005 - March

  4. Data Challenges: Determining Lost to Follow-up This process is complicated by: • Incomplete data • Involvement of numerous agencies • Inconsistent reporting • Tracking system limitations EHDI 2005 - March

  5. Addressing Trends Progress from one phase to the next indicates problem areas and issues: • How many babies referred from inpatient screening received outpatient testing? • How many babies referred to diagnostics received diagnostics? • How many babies were confirmed with a hearing loss? EHDI 2005 - March

  6. Case Example159,804 births EHDI 2005 - March

  7. Trend Analysis • 36% were potentially lost between inpatient screen and outpatient test • 11% were potentially lost between outpatient screen and diagnostic test • Potential issues: Reporting compliance Parent compliance Inadequate referral EHDI 2005 - March

  8. Possible solutions: Screening phase Reduce Number of infants who need outpatient screening Low refer rate at discharge EHDI 2005 - March

  9. Example 1: Hospital dataImproved screening technique EHDI 2005 - March

  10. Example 2: Hospital dataOAE alone vs OAE + screening ABR EHDI 2005 - March

  11. Example 2: Actual % of lost Screening phase EHDI 2005 - March

  12. Tips for reducing number of infants need outpatient screening • Schedule screening when babies are in the best behavioral state • Make a second effort prior to discharge to screen babies who did not pass at first • Minimize noise and confusion in the screening area • Use the best protocol for your situation (OAE alone or OAE + screening ABR) • Have backup equipment and supplies readily available • For OAE and screening ABR (using probe to deliver stimuli), a good and snug probe fit is critical • For AABR procedures, screen when myogenic activity is low http://www.infanthearing.org/faq/referrate.html http://www.infanthearing.org/faq/referrate.html

  13. Hospital levelPotential problems and solutions • Prior to discharge: • Meet parents or guardians to explain the role of hearing in a child’s language development • Present a hearing screening brochure in their language • Present a separate paper with hearing screening results and a phone number to call for outpatient screening, write down the date and time of the appointment and the location if different than the inpatient screening • Update contact information and pediatrician’s name Common reasons: • No contact information • Inaccurate identification of pediatrician • Language barrier If you make it a big deal, parents think that it is a big deal EHDI 2005 - March

  14. Quality assurance • Education on reporting requirements for relevant stakeholders • Provision of feedback to hospitals based on data reported • Review parent education materials • Re-assess referral protocol • Re-assess tracking protocol EHDI 2005 - March

  15. Diagnostic Phase EHDI 2005 - March

  16. Case Example1044 referrals to diagnostics EHDI 2005 - March

  17. Trend Analysis • 40% referred to diagnostics did not receive a definitive diagnosis • Potential Issues: Reporting compliance Incomplete/inadequate testing Lack of confidence in test findings Medical complications EHDI 2005 - March

  18. Diagnostic phase: Reduce the number of infants not receiving diagnostic services • Clarify in writing the process following screening using a diagram complete with pertinent information. • Emphasize the need to hear in order to develop oral language • Clarify the need for a diagnostic ABR prior to 3 months • Work collaboratively with physicians • Communicate your belief that parental involvement is the key in this journey and that we are respectful of their decision. Should these tasks be delegated to certain numbers of trained individuals? EHDI 2005 - March

  19. Potential Solutions • Education on appropriate diagnostic testing and intervention protocols Audiologists Physicians Early Interventionists Hospitals • Assist hospitals with finding appropriate referral sites EHDI 2005 - March

  20. Intervention Phase EHDI 2005 - March

  21. Reduce the number of infants lost to F/U • Have pictures of children with hearing aids in your office. • Have other parents call them. • Have the parents watch a brief video about EI • Have a discussion about parents and family involvement, trouble shoot challenges, and make a written plan that is suitable for the family’s needs. • Share optimism about the benefits of intervention • Clarify the process in writing using a diagram complete with pertinent information • Make an immediate referral to EI or contact the pediatrician if parents desire. • Communicate your belief that parental involvement is the key in this journey and that we are respectful of their decision. EHDI 2005 - March

  22. Hearing loss identification process 1 3 6 EHDI 2005 - March

  23. Other related efforts • Use a common data source in the hospital • Use electronic transfer with a basic format (text file) • Use a consistent schedule for updating the data • Use other health care provider resources (early health start, PHN or EIS) • Data management: • Accurate • Transferable • Accessible to other agencies EHDI 2005 - March

  24. State Data% lost EHDI 2005 - March

  25. Percent of children lost at each EHDI stage - State A Calculated from # eligible to be screened

  26. Percent of children lost at each EHDI stage - State B EHDI 2005 - March

  27. Keys to Success • Education • Collaboration • Communication EHDI 2005 - March

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