Should Newborn Hearing Screening be the Standard of Care in the United States

1

Evaluation of a Statewide Early Hearing
Detection and Intervention Program
Karen M. Ditty, M.S.,CCC-A National Center for
Hearing Assessment and Management Utah State
University www.infanthearing.org
2
Data Collection(June / July 2002)

• Questionnaires completed by
• 35 of 42 hospitals
• 104 physicians
• 208 parents of babies who
• passed the inpatient screen (n104)
• referred on inpatient and passed outpatient
  (n83)
• referred on both inpatient and outpatient (n24)
• Analysis of data from the states EHDI Data
  Management Program for 1999, 2000, and 1st 6
  months of 2001
• Site visits to 4 hospitals

3
Evaluation Results for.

• Universal Newborn Hearing Screening
• Appropriate and Timely Diagnosis of the Hearing
  Loss
• Prompt Enrollment in Appropriate Early
  Intervention
• A Medical Home for all Newborns
• Culturally Competent Family Support
• Effective Tracking and Follow-up

4
Newborn Hearing Screening

• All 42 hospitals in the state have universal
  newborn hearing screening programs.
• Hospitals screen 98 of all live births (mostly
  by health care assistants, LPNs, or nurses)
• Only about 88 of babies pass screening prior to
  hospital discharge (little improvement in last 3
  years)
• 26 of physicians think that less than 60 of
  babies in the state are screened.

5
Newborn Hearing Screening (continued)

• Only 54 of newborn hearing screening
  coordinators have some time dedicated
  specifically to the hearing screening program.
• Less than 70 of babies who need outpatient
  screens complete them (little improvement in last
  3 years)

6
Efficiency of Early Hearing Detection and
Intervention

• 1999 2000 2001(6
  mos)
• (n43,547)
  (n46,771) (n23,307)
• Inpatient Refer Rates (state average)
  85.2 85.5 87.5
• 10 most effective hospitals
  92.8 93.4 93.7
• 10 least effective hospitals
  70.7 63.4 74.4
• Outpatient completion (state average)
  70.1 67.1 68.3
• 10 most effective hospitals
  94.5 95.9 94.7
• 10 least effective hospitals
  45.3 52.9 58.08
• Reported Completion of Diagnostic 133 of 357
  165 of 380 41 of 110
• Evaluations (state average)
  37.3 43.4 40
• of babies who complete Diagnostic 33 of 133
  65 of 165 12 of 41
• Eval have permanent hearing loss
  24.8 39.4 29.3
• Number of babies still in process 224
  215 69
• only 3 months worth of data

7
Diagnostic Evaluations Should be Completed by 3
Months of Age

• In an office visit with a baby who didnt pass
  the final screening test, 90 of physicians say
  they refer for a diagnostic evaluation ASAP.
• 23 of physicians think that definitive hearing
  tests cant be done until a baby is 3 or more
  months old.

8
Complete Diagnostic Evaluations by 3 Months of
Age (continued)

• Many programs (20) do no follow-up after
  referring to the physician
• For babies who do not pass the final screening
  test, only about half of parents are given names
  of audiologists or referred to their physician.

9
Enrolled in Appropriate Intervention by 6 Months
of Age

• Only 63 of programs keep track of whether babies
  with hearing loss are enrolled in Early
  Intervention programs
• Many program coordinators dont know what EI
  options are available in their area
• 47 of physicians dont realize babies can be fit
  with hearing aids before 6 months of age

10
All Newborns Should Have a Medical Home

• All physicians were aware that their hospital had
  a UNHS program and thought it was valuable
• Most program coordinators report that they know
  who the primary care physician is for babies who
  do not pass
• Only 37 of physicians think their hospital does
  a good job of educating physicians about EHDI
  programs and most would like more information

11
Babies Diagnosed with Hearing Loss Are Not
Referred to Some Medical Specialists As Often As
Desired

• Assume a newborn for whom you are caring is
  diagnosed with a moderate to profound bilateral
  hearing loss. If no other indications are
  present, would you refer the baby for a(n)
• Always
• or Often
• Ophthalmological evaluation 24
• Genetic evaluation 38
• Otolaryngological evaluation 94

12
Families Should be Provided with Culturally
Competent Services

• Over 90 of parents glad hearing screening is
  done at their hospital, and confident the
  hearing tests were correct
• Families who remember receiving written
  information about the EHDI program, think it is
  understandable, attractive, and the right amount
  of detail
• 95 of parents whose baby didnt pass, reported
  they knew what to do next
• 85 of parents who had questions reported that
  they were answered well

13
After all hearing tests were completed, how did
you feel?


Strongly Agree or
Agree Worried about my babys hearing
11 Confused about
the results of screening tests
10 Glad hearing screening is done at this
hospital 91 Confident the hearing tests were
correct 91
Frustrated by how long it took to get
results 13 Happy with the professional way
screening was done 86

Confident about what I needed to do next
88
14
If the analysis is limited to those whose babies
did not pass the inpatient or outpatient screen
After all hearing tests were completed, how did
you feel? Strongly
Agree or Agree

total
group subgroup Worried about my babys
hearing 11 24
Confused about the results of screening
tests 10 24 Glad hearing
screening is done at this hospital 91 70 Conf
ident the hearing tests were correct 91 70

Frustrated by how long it took to get
results 13 28 Happy with the professional
way screening was done 86 76

Confident about what I needed to
do next 88 56

15
Families Should be Provided with Culturally
Competent Services (continued)

• Only 49 remember being given written information
  about newborn hearing screening- - - many would
  have liked more
• Over half didnt know their hospital had a
  newborn hearing screening program before they
  checked in
• Many programs dont have materials in Spanish
  despite large Spanish speaking population
• Parents whose babies require diagnostic
  evaluations
• 34 say paying for the tests was difficult
• 32 agree the experience was scary and
  confusing
• 17 say they needed help, but didnt know where
  to get it

16
Effective Tracking and Follow-up

• Most people think the states Data Management
  Program is very useful, but many are unaware of
  valuable features
• 25 to 50 of hospitals dont check to see if
  babies who dont pass screening receive a
  diagnostic evaluation.
• Program coordinators report that 85 of babies
  come back for outpatient screening, but only 68
  really do

17
Support from State Department of Health

• Past help has been viewed as extremely postive,
  especially
• Promoting UNHS
• Developing educational materials
• Communicating with parents and physicians
• Connecting referred babies to diagnostic
  evaluations
• Hospitals would like more assistance
• Financing the cost of screening
• Data management and tracking

18
Conclusions

• Much progress has been made and a solid
  foundation is in place for developing an
  exemplary program
• There are excellent models in the state for each
  component of EHDI, but only a few programs have
  put it all together
• Parents and physicians are very supportive of
  EHDI programs
• All stakeholders need better information about
  resources, benefits and rational for EHDI
  programs
• High refer rates and many babies lost for
  tracking and follow-up are serious problems which
  need to be resolved

19
Recommendations

• Hospitals should
• Be more proactive about following up with babies
  who do not pass the inpatient and/or outpatient
  screening
• Reduce inpatient refer rates
• Substantially improve outpatient completion rates
• Substantially improve reporting and completion
  rates for diagnostic evaluations

20
Recommendations

• State Department of Health should take the lead
  in
• Continuing to Prepare educational materials for
  parents (English and Spanish) and physicians and
  make them available to hospital programs
• Helping hospitals implement the XYZ Data
  Management Program and assisting with follow-up
• Continuing the excellent training and support
  they have provided to hospitals

21
Recommendations

• Physicians need to
• Be better informed about the benefits and
  capabilities of early hearing detection and
  intervention
• Be more involved in making sure parents get the
  follow-up and services they need
• Do a better job of referring babies with
  diagnosed hearing loss for opthamalogical and
  genetic evaluations.

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I am a great believer in luck, and I find that
the harder I work, the more I have of it.
---Thomas Jefferson