1. Barriers to Follow-up in Newborn Hearing Screening Programs
National Center for Hearing Assessment & Management
Utah State University
Kathleen Watts, MA Steve Jones, MS
Project Coordinator Research Assistant

2. Baby Boys – Twins A & B Born 9/99
Case History #1
Baby Boys – Twins A & B Born 9/99
10/99 Referred for diagnostic evaluations (1 month)
11/99 – Diagnostic evaluations (2 months)
Twin A was sedated
No OAEs bilaterally
ABR inconclusive
Twin B could not be sedated because of mother’s schedule
2/01 – Phone call to follow-up with parents (17 months)
Father reports insurance refusal to pay for diagnostic testing
Parents concerned because Twin A does not respond to noise as well as Twin B does
Parents referred to state for sound field testing

3. Case History #1 continued
3/01 – Sound field testing (18 months)
Both twins:
Absent OAE’s
Normal tymps
Localized to left and right in sound field

4. Case History #2 Baby Girl – Born 3/01
3/01 Referred on inpatient screen (less than 1 month)
4/01 Unable to locate to confirm outpatient screen appt (1 month)
Contacted community health center (medical home) to locate
Referred on outpatient screen
Did not keep appointment for diagnostic evaluation
5/01 Moved and no forwarding information available (2 months)
Audiologist contacted medical home to locate
ABR not completed because baby awakened
Broken appointment for completion of ABR

5. Case History #2 continued
6/01 Family phone disconnected (3months)
Medical home contacted
Medical home sent family to complete ABR at next well baby
check up
Bilateral mild/moderate hearing loss
ENT visit
8/01 Hearing loss confirmed (5 months)
Sound field testing
Referred for early intervention services
9/01 Early intervention unable to locate family (6 months)
Medical home notified – provided new phone number
Aided
Enrolled in early intervention services

6. Results of Evaluation of Utah’s EHDI Program - 2001
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

7. Data Collection (June / July 2001)
Questionnaires completed by :
35 of 42 hospitals
86 physicians
171 parents of babies who:
passed the inpatient screen (n=84)
referred on inpatient and passed outpatient (n=66)
referred on both inpatient and outpatient (n=21)
Analysis of data for 1999, 2000, and 1st 6 months of 2001
Site visits to 4 hospitals

8. Newborn Hearing Screening
Only about 88% of babies pass screening prior to hospital discharge (false positives)
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

9. Efficiency of Early Hearing Detection and Intervention in Utah
(6 mos)
(n=43,547) (n=46,771) (n=23,307)
Outpatient completion (state average) % 67.1% 80.2%
Reported Completion of Diagnostic 133 of of of 223
Evaluations (state average) % 43.4% 35.9%
Number of babies still “in process”

10. Complete Diagnostic Evaluations by 3 Months of Age
21% of physicians think that definitive hearing tests can’t be done until a baby is 3 or more months old.
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.

11. 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 don’t know what EI options are available
48% of physicians don’t realize babies can be fit with hearing aids before 6 months of age

12. All Newborns Should Have a Medical Home
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

13. Families Should be Provided with Culturally Competent Services
Only 49% remember being given written information about newborn hearing screening- - - many would have liked more
Over half didn’t know their hospital had a newborn hearing screening program before they checked in
Many programs don’t 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 didn’t know where to get it”

14. Parents’ feelings about EHDI
After all hearing tests were completed, how did you feel?
Strongly Agree
or Agree
total group subgroup
Worried about my baby’s hearing % 24%
Confused about the results of screening tests % 24%
Glad hearing screening is done at this hospital 91% 70%
Confident the hearing tests were correct % 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 % 56%

15. Effective Tracking and Follow-up
25% to 50% of hospitals don’t check to see if babies who don’t pass screening receive a diagnostic evaluation
Program coordinators report that 85% of babies come back for outpatient screening, but only 68% really do
Only about 40% of babies are reported to have completed a diagnostic evaluation by the time they are 3 months old

16. Support from State Department of Health
Hospitals would like more assistance in data management and tracking for babies referred for re- screens and for diagnostic evaluations

17. Conclusions
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

18. Recommendations Hospitals should:
Be more proactive about following up with babies who do not pass the inpatient and/or outpatient screening
Improve screening technique to reduce false positives
Substantially improve outpatient completion rates
Substantially improve reporting and completion rates for diagnostic evaluations

19. 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

20. Recommendations State Department of Health should take the lead in:
Continuing to prepare educational materials for parents (English and Spanish) and physicians
Helping hospitals implement data management program and assisting with follow-up
Continuing the excellent training and support they have provided to hospitals
Do an in depth study of the reasons why follow-up rates for re-screens and diagnostics remain unacceptably high

21. Barriers identified by a working group of the NIDCD National Institute on Deafness and Other Communication Disorders
Some babies are not screened
Transportation barriers
Funding barriers
Staffing barriers
'Lost messages' and the role of communication in effective intervention
Language and literacy barriers

22. Efficiency of Early Hearing Detection and Intervention in Utah
(n=46,771) (n=48,897)
Inpatient Pass Rates (state average) 86% 86%
10 most effective hospitals 93% 96%
10 least effective hospitals 63% 75%
Outpatient completion (state average) 67% 77%
10 most effective hospitals 96% 95%
10 least effective hospitals 53% 58%
On average, 134 babies are born in Utah hospitals each day.
The inpatient screen rate is 99% for all Utah hospitals (n=48,897).
The outpatient screen rate is 77% for all Utah hospitals (n=3842/4989).

23. Home Births Planned
In 2002, 1% of all Utah births were "Home Birth Planned."
Only 5% of HBP are screened as "inpatients."
Only 5% of HBP are screened as "outpatients."
HBP babies account for 34% of all Utah babies referred yet not completing outpatient screenings.
Hence, of babies lost to follow-up, one-third are HBP babies.
Another way of thinking of it is that 1% of Utah babies account for one-third of all babies who are referred yet lost for follow-up.

24. Comparing strategies used by best and worst hospitals
March 2003 Survey of UNHS coordinators
35 of the 42 Utah hospitals are represented.
Of 7 hospitals not represented, 5 are considered "most problematic" in their rescreen rate.
These 7 hospitals excluded from analyses

25. Differences between Best & Worst hospitals Note: estimates are based on median rather than mean statistics.

26. Follow-up Strategies Best Hs more likely to discuss UNHS with parents
Best Hs more apt to use many strategies
Best Hs place more emphasis on communicating via phone and less emphasis on communicating via mail.
Best Hs more likely to discuss UNHS with parents
Best Hs place more emphasis on communicating via phone and less emphasis on communicating via mail.
Best Hs more apt to use many strategies

27. Current Study 8 hospitals 2 purposes: Statewide
Both, small and large hospitals
Varying success in UNHS
2 purposes:
Intervention
Determining barriers to follow-up

28. % Completing Outpatient Screening
Most study hospitals are not meeting State goal that 90% of babies referred will complete outpatient screening by 1 month of age.

29. Preliminary Findings: Barriers
Parents are being misinformed by hospital staff
Transportation barriers exist
ESL barriers exist
Lack of hospital resources exist
Inefficient tracking among hospitals and personnel for NICU and transfer babies.
Out-of-state babies
Message of need for early detection is often not stressed