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

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

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

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

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

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

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

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

Efficiency of Early Hearing Detection and Intervention in Utah 1999 2000 2001(6 mos) (n=43,547) (n=46,771) (n=23,307) Outpatient completion (state average) 70.1% 67.1% 80.2% Reported Completion of Diagnostic 133 of 357 165 of 380 80 of 223 Evaluations (state average) 37.3% 43.4% 35.9% Number of babies still “in process” 224 215 143

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.

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

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

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”

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 11% 24% Confused about the results of screening tests 10% 24% Glad hearing screening is done at this hospital 91% 70% Confident 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%

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

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

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

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

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

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

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

Efficiency of Early Hearing Detection and Intervention in Utah 2000 2002 (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).

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.

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

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

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

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

% 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.

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