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

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

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

Case History #2 Baby boy born - 7/00 7/00 - Failed OAE bilaterally x2 (less than 1 month) 7/00 - Failed OAE bilaterally x2 (less than 1 month) Referred for diagnostic evaluation Referred for diagnostic evaluation 2/01 - Phone call to follow-up with mother (7 months) 2/01 - Phone call to follow-up with mother (7 months) Reports that pediatrician recommends waiting until the baby is one year old to test hearing Reports that pediatrician recommends waiting until the baby is one year old to test hearing Reports that pediatrician is doing tympanograms often because baby was born with so much fluid in both ears Reports that pediatrician is doing tympanograms often because baby was born with so much fluid in both ears Reports that doctor told her hearing loss wont affect speech development until a baby is about a year old Reports that doctor told her hearing loss wont affect speech development until a baby is about a year old

Case History #2 continued 9/01 – Phone call to follow-up with mother (14 months) 9/01 – Phone call to follow-up with mother (14 months) Reports no diagnostic evaluations done Reports no diagnostic evaluations done Reports pediatrician still recommending waiting to do diagnostics Reports pediatrician still recommending waiting to do diagnostics File closed per parent request File closed per parent request

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

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

Case History #4 Sisters – Born 9/99 and 8/02 Father is deaf, Mother is hearing 9/99 Referred on inpatient screen (less than 1 month) 9/99 Referred on inpatient screen (less than 1 month) Father refused re-screen appointment 1/00 Mother requested outpatient re-screen (4 months) 1/00 Mother requested outpatient re-screen (4 months) Referred both ears Referred both ears 3/00 Mother requested out patient re-screen (6months) 3/00 Mother requested out patient re-screen (6months) Referred both ears Referred both ears ABR recommended ABR recommended 4/00 Father refused diagnostics and early intervention (7 months) 4/00 Father refused diagnostics and early intervention (7 months) Newborn hearing record closed Newborn hearing record closed

Case History #4 continued 4/02 Enrolled in early intervention (31 months) 4/02 Enrolled in early intervention (31 months) Severe SNHL diagnosed when mother insisted that testing be completed Severe SNHL diagnosed when mother insisted that testing be completed /02 Referred on inpatient & outpatient screens (less than 1 week) 8/02 Referred on inpatient & outpatient screens (less than 1 week) 8/02 ABR (less than 2 weeks) 8/02 ABR (less than 2 weeks) 9/02 Hearing aid fitting (1 month) 9/02 Hearing aid fitting (1 month) 11/02 Enrolled in early intervention (3 months) 11/02 Enrolled in early intervention (3 months)

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

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

Newborn Hearing Screening Only about 88% of babies pass screening prior to hospital discharge (false positives) 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. 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 Less than 70% of babies who need outpatient screens complete them

Efficiency of Early Hearing Detection and Intervention in Utah (6 mos) (6 mos) (n=43,547) (n=46,771) (n=23,307) (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 of of 223 Evaluations (state average) 37.3%43.4%35.9% Evaluations (state average) 37.3%43.4%35.9% Number of babies still in process

Complete Diagnostic Evaluations by 3 Months of Age 21% of physicians think that definitive hearing tests cant be done until a baby is 3 or more months old. 21% of physicians think that definitive hearing tests cant be done until a baby is 3 or more months old. Many programs (20%) do no follow-up after referring to the physician 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. 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 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 Many program coordinators dont know what EI options are available 48% of physicians dont realize babies can be fit with hearing aids before 6 months of age 48% of physicians dont 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 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 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 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 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 Many programs dont have materials in Spanish despite large Spanish speaking population Parents whose babies require diagnostic evaluations: Parents whose babies require diagnostic evaluations: 34% say paying for the tests was difficult 34% say paying for the tests was difficult 32% agree the experience was scary and confusing 32% agree the experience was scary and confusing 17% say they needed help, but didnt know where to get it 17% say they needed help, but didnt 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 babys hearing 11%24% Confused about the results of screening tests 10%24% Glad hearing screening is done at this hospital91%70% Confident the hearing tests were correct 91%70% Frustrated by how long it took to get results13%28% Happy with the professional way screening was done86%76% Confident about what I needed to do next 88%56%

Effective Tracking and Follow-up 25% to 50% of hospitals dont check to see if babies who dont pass screening receive a diagnostic evaluation 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 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 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 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 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 High refer rates and many babies lost for tracking and follow-up are serious problems which need to be resolved

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

Recommendations Physicians need to: Physicians need to: Be better informed about the benefits and capabilities of early hearing detection and intervention 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 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: State Department of Health should take the lead in: Continuing to prepare educational materials for parents (English and Spanish) and physicians Continuing to prepare educational materials for parents (English and Spanish) and physicians Helping hospitals implement data management program and assisting with follow-up Helping hospitals implement data management program and assisting with follow-up Continuing the excellent training and support they have provided to hospitals 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 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 Some babies are not screened Transportation barriers Transportation barriers Funding barriers Funding barriers Staffing barriers Staffing barriers 'Lost messages' and the role of communication in effective intervention 'Lost messages' and the role of communication in effective intervention Language and literacy barriers Language and literacy barriers

Efficiency of Early Hearing Detection and Intervention in Utah (n=46,771) (n=48,897) (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).

Large vs. Small Hospitals LH: 34% (n=14/41) of Utah hospitals had over 2000 total births in LH: 34% (n=14/41) of Utah hospitals had over 2000 total births in SH: 34% (n=14/41) of Utah hospital had less than 150 total births in SH: 34% (n=14/41) of Utah hospital had less than 150 total births in LH: These 14 hospitals account for 81% of all 2002 hospital births. LH: These 14 hospitals account for 81% of all 2002 hospital births. SH: These 14 hospitals account for only 2% of all 2002 hospital births. SH: These 14 hospitals account for only 2% of all 2002 hospital births. LH: The birth rate median for large hospitals is 8-9 babies per day. LH: The birth rate median for large hospitals is 8-9 babies per day. SH: The cumulative birthrate for 'Small hospitals' is 3 babies per day. SH: The cumulative birthrate for 'Small hospitals' is 3 babies per day. LH: Hence, 1/3 of the Utah hospitals account for 81% of the 2002 hospital birthrate. LH: Hence, 1/3 of the Utah hospitals account for 81% of the 2002 hospital birthrate. SH: Hence, 1/3 of the Utah hospitals account for only 2% of the 2002 hospital birthrate. SH: Hence, 1/3 of the Utah hospitals account for only 2% of the 2002 hospital birthrate. LH: The inpatient screen rate is 99% for 'Large Hospitals' (n>1800 annual births). LH: The inpatient screen rate is 99% for 'Large Hospitals' (n>1800 annual births). SH: The inpatient screen rate is 99% for small hospitals (n<150 annual births). SH: The inpatient screen rate is 99% for small hospitals (n<150 annual births). LH: The outpatient screen rate is 79% for 'Large Hospitals' (n=2751/3483 referred) LH: The outpatient screen rate is 79% for 'Large Hospitals' (n=2751/3483 referred) SH: The outpatient screen rate is 80% for 'Small Hospitals' (n=173/218 referred) SH: The outpatient screen rate is 80% for 'Small Hospitals' (n=173/218 referred)

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.

2002 Birth & UNHS rates

Comparing strategies used by best and worst hospitals March 2003 Survey of UNHS coordinators March 2003 Survey of UNHS coordinators 35 of the 42 Utah hospitals are represented. 35 of the 42 Utah hospitals are represented. Of 7 hospitals not represented, 5 are considered "most problematic" in their rescreen rate. Of 7 hospitals not represented, 5 are considered "most problematic" in their rescreen rate. These 7 hospitals excluded from analyses 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 place more emphasis on communicating via phone and less emphasis on communicating via mail. Best Hs more apt to use many strategies

% Passing Inpatient Screening Study hospitals are improving the % passing inpatient screening 3 of 8 hospitals still not meeting State goal.

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

% Screened as Inpatients

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