Barriers to Follow-up in Newborn Hearing Screening Programs

National Center for Hearing Assessment & ManagementNational Center for Hearing Assessment & ManagementUtah State UniversityUtah State University

Kathleen Watts, MA Steve Jones, MSKathleen Watts, MA Steve Jones, MS Project Coordinator Research AssistantProject Coordinator Research Assistant

Case History #1Case History #1Baby Boys – Twins A & B Born 9/99Baby 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 sedatedTwin A was sedated

No OAEs bilaterallyNo OAEs bilaterally ABR inconclusiveABR inconclusive

Twin B could not be sedated because of mother’s Twin B could not be sedated because of mother’s schedule schedule

No OAEs bilaterallyNo 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 Father reports insurance refusal to pay for diagnostic

testingtesting Parents concerned because Twin A does not respond to Parents concerned because Twin A does not respond to

noise as well as Twin B doesnoise 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 Case History #1 continuedcontinued

3/01 – Sound field testing (18 months)3/01 – Sound field testing (18 months) Both twins:Both twins:

Absent OAE’sAbsent OAE’s Normal tympsNormal tymps Localized to left and right in sound fieldLocalized to left and right in sound field

Case History #2Case History #2Baby Girl – Born 3/01Baby 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 locateContacted community health center (medical home) to locate Referred on outpatient screenReferred on outpatient screen Did not keep appointment for diagnostic evaluationDid 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 locateAudiologist contacted medical home to locate ABR not completed because baby awakenedABR not completed because baby awakened Broken appointment for completion of ABRBroken appointment for completion of ABR

Case History #2Case History #2continuedcontinued

6/01 Family phone disconnected (3months)6/01 Family phone disconnected (3months)Medical home contacted Medical home contacted Medical home sent family to complete ABR at next well baby Medical home sent family to complete ABR at next well baby

check upcheck up Bilateral mild/moderate hearing lossBilateral mild/moderate hearing loss ENT visitENT visit

8/01 Hearing loss confirmed (5 months)8/01 Hearing loss confirmed (5 months) Sound field testingSound field testing Referred for early intervention servicesReferred 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 numberMedical home notified – provided new phone number AidedAided Enrolled in early intervention servicesEnrolled in early intervention services

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

Universal Newborn Hearing ScreeningUniversal Newborn Hearing Screening

Appropriate and Timely Diagnosis of the Hearing Appropriate and Timely Diagnosis of the Hearing LossLoss

Prompt Enrollment in Appropriate Early Intervention Prompt Enrollment in Appropriate Early Intervention

A Medical Home for all NewbornsA Medical Home for all Newborns

Culturally Competent Family SupportCulturally Competent Family Support

Effective Tracking and Follow-up Effective Tracking and Follow-up

Data CollectionData Collection

(June / July 2001(June / July 2001))

Questionnaires completed by :Questionnaires completed by :

35 of 42 hospitals35 of 42 hospitals

86 physicians86 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 Analysis of data for 1999, 2000, and 1for 1999, 2000, and 1stst 6 months of 2001 6 months of 2001

Site visits to 4 hospitalsSite visits to 4 hospitals

Newborn Hearing ScreeningNewborn Hearing Screening

Only about 88% of babies Only about 88% of babies pass screening prior to pass screening prior to hospital discharge (false hospital discharge (false positives)positives)

Only 54% of newborn hearing Only 54% of newborn hearing screening coordinators have screening coordinators have some time dedicated some time dedicated specifically to the hearing specifically to the hearing screening program.screening program.

Less than 70% of babies who Less than 70% of babies who need outpatient screens need outpatient screens complete them complete them

Efficiency of Early Hearing Detection Efficiency of Early Hearing Detection and Intervention in Utahand Intervention in Utah

19991999 2000 2001(6 mos)2000 2001(6 mos)

(n=43,547) (n=46,771) (n=23,307)(n=43,547) (n=46,771) (n=23,307)

Outpatient completion (state average)Outpatient completion (state average) 70.1% 70.1% 67.1%67.1% 80.2% 80.2%

Reported Completion of DiagnosticReported Completion of Diagnostic 133 of 357 165 of 380 133 of 357 165 of 380 80 of 223 80 of 223

Evaluations (state average)Evaluations (state average) 37.3%37.3% 43.4%43.4% 35.9%35.9%

Number of babies still “in process”Number of babies still “in process” 224 224 215 215 143 143

Complete Diagnostic Complete Diagnostic Evaluations by 3 Months of Evaluations by 3 Months of

AgeAge 21% of physicians think that 21% of physicians think that

definitive hearing tests can’t be definitive hearing tests can’t be done until a baby is 3 or more done until a baby is 3 or more months old.months old.

Many programs (20%) do no Many programs (20%) do no follow-up after referring to the follow-up after referring to the physicianphysician

For babies who do not pass For babies who do not pass the final screening test, only the final screening test, only about half of parents are about half of parents are given names of audiologists given names of audiologists or referred to their physician.or referred to their physician.

Enrolled in Appropriate Enrolled in Appropriate Intervention by 6 Months of Intervention by 6 Months of

AgeAge Only 63% of programs keep Only 63% of programs keep

track of whether babies with track of whether babies with hearing loss are enrolled in hearing loss are enrolled in Early Intervention programsEarly Intervention programs

Many program coordinators Many program coordinators don’t know what EI options are don’t know what EI options are availableavailable

48% of physicians don’t 48% of physicians don’t realize babies can be fit with realize babies can be fit with hearing aids before 6 months hearing aids before 6 months of ageof age

All Newborns Should Have a All Newborns Should Have a Medical HomeMedical Home

Most program Most program coordinators report coordinators report that they know who that they know who the primary care the primary care physician is for babies physician is for babies who do not passwho do not pass

Only 37% of Only 37% of physicians think their physicians think their hospital does a good hospital does a good job of educating job of educating physicians about EHDI physicians about EHDI programs and most programs and most would like more would like more informationinformation

Families Should be Provided with Families Should be Provided with Culturally Competent ServicesCulturally Competent Services

Only 49% remember being given Only 49% remember being given written information about written information about newborn hearing screening- - - newborn hearing screening- - - many would have liked moremany would have liked more

Over half didn’t know their Over half didn’t know their hospital had a newborn hearing hospital had a newborn hearing screening program before they screening program before they checked inchecked in

Many programs don’t have Many programs don’t have materials in Spanish despite materials in Spanish despite large Spanish speaking large Spanish speaking populationpopulation

Parents whose babies require Parents whose babies require diagnostic evaluations:diagnostic evaluations:

34% say “paying for the tests was 34% say “paying for the tests was difficult”difficult”

32% agree the “experience was scary and 32% agree the “experience was scary and confusing”confusing”

17% say they “needed help, but didn’t 17% say they “needed help, but didn’t know where to get it”know where to get it”

Parents’ feelings about EHDIParents’ feelings about EHDI

After all hearing tests were completed, how did you feel? Strongly Agree or Agree

total group subgroupWorried 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-upEffective Tracking and Follow-up

25% to 50% of hospitals don’t check to 25% to 50% of hospitals don’t check to see if babies who don’t pass screening see if babies who don’t pass screening receive a diagnostic evaluationreceive a diagnostic evaluation

Program coordinators report that 85% of Program coordinators report that 85% of babies come back for outpatient babies come back for outpatient screening, but only 68% really doscreening, but only 68% really do

Only about 40% of babies are reported to Only about 40% of babies are reported to have completed a diagnostic evaluation have completed a diagnostic evaluation by the time they are 3 months oldby the time they are 3 months old

Support from State Department Support from State Department of Healthof Health

Hospitals would like more Hospitals would like more assistance in data assistance in data management and tracking management and tracking for babies referred for re-for babies referred for re-screens and for diagnostic screens and for diagnostic evaluationsevaluations

ConclusionsConclusions

All stakeholders need better All stakeholders need better information about resources, benefits information about resources, benefits and rational for EHDI programsand rational for EHDI programs

High refer rates and many babies lost High refer rates and many babies lost for tracking and follow-up are serious for tracking and follow-up are serious problems which need to be resolvedproblems which need to be resolved

RecommendationsRecommendations Hospitals should:Hospitals should:

• Be more proactive about following up with babies Be more proactive about following up with babies who do not pass the inpatient and/or outpatient who do not pass the inpatient and/or outpatient screeningscreening

• Improve screening technique to reduce false Improve screening technique to reduce false positivespositives

• Substantially improve outpatient completion ratesSubstantially improve outpatient completion rates

• Substantially improve reporting and completion Substantially improve reporting and completion rates for diagnostic evaluationsrates for diagnostic evaluations

RecommendationsRecommendations Physicians need to:Physicians need to:

• Be better informed about the benefits and Be better informed about the benefits and capabilities of early hearing detection and capabilities of early hearing detection and interventionintervention

• Be more involved in making sure parents get the Be more involved in making sure parents get the follow-up and services they needfollow-up and services they need

RecommendationsRecommendations State Department of Health should take the lead State Department of Health should take the lead

in:in:

• Continuing to prepare educational materials for Continuing to prepare educational materials for parents (English and Spanish) and physiciansparents (English and Spanish) and physicians

• Helping hospitals implement data management Helping hospitals implement data management program and assisting with follow-upprogram and assisting with follow-up

• Continuing the excellent training and support they Continuing the excellent training and support they have provided to hospitalshave provided to hospitals

• Do an in depth study of the reasons why follow-up Do an in depth study of the reasons why follow-up rates for re-screens and diagnostics remain rates for re-screens and diagnostics remain unacceptably highunacceptably high

Barriers identified by a working group Barriers identified by a working group of of

the NIDCDthe NIDCD

National Institute on Deafness and Other Communication DisordersNational Institute on Deafness and Other Communication Disorders Some babies are not screenedSome babies are not screened Transportation barriersTransportation barriers Funding barriersFunding barriers Staffing barriersStaffing barriers 'Lost messages' and the role of 'Lost messages' and the role of

communication in effective communication in effective interventionintervention

Language and literacy barriersLanguage and literacy barriers

Efficiency of Early Hearing Detection Efficiency of Early Hearing Detection and Intervention in Utahand Intervention in Utah

2000 20022000 2002

(n=46,771) (n=48,897)(n=46,771) (n=48,897)

Inpatient Pass Rates (state average)Inpatient Pass Rates (state average) 86% 86% 86%86%

10 most effective hospitals10 most effective hospitals 93% 93% 96%96%

10 least effective hospitals10 least effective hospitals 63% 63% 75%75%

Outpatient completion (state average)Outpatient completion (state average) 67% 67% 77% 77%

10 most effective hospitals10 most effective hospitals 96% 96% 95%95%

10 least effective hospitals10 least effective hospitals 53% 53% 58%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 PlannedHome 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 Comparing strategies used by best and worst hospitalsby best and worst hospitals

March 2003 Survey of UNHS March 2003 Survey of UNHS coordinatorscoordinators 35 of the 42 Utah hospitals are 35 of the 42 Utah hospitals are

represented.represented. Of 7 hospitals not represented, 5 are Of 7 hospitals not represented, 5 are

considered "most problematic" in considered "most problematic" in their rescreen rate.their rescreen rate.

These 7 hospitals excluded from These 7 hospitals excluded from analysesanalyses

Differences between Best & Worst Differences between Best & Worst hospitalshospitals

Note: estimates are based on median rather than mean statistics.Note: estimates are based on median rather than mean statistics.

ANNUAL WORST

H’s BEST

H’s

Birth rate 357 246

% births screened as inpatients 96% 100%

% of referred who are screened as outpatients

71% 94%

Follow-up StrategiesFollow-up StrategiesWhat follow-up strategies work best for your hospital DISCUSS LETTER PHONE

SCHED. APPT.

BEFORE DISCHARGE

ALL OTHER STRATEGIES

WORST H's 2 5 7 3 4

BEST H's 5 4 9 3 13

• 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 StudyCurrent Study 8 hospitals8 hospitals

StatewideStatewide Both, small and large Both, small and large hospitalshospitals Varying success in UNHSVarying success in UNHS

2 purposes:2 purposes: InterventionIntervention Determining barriers to follow-Determining barriers to follow-upup

% Completing Outpatient % Completing Outpatient ScreeningScreening

Note Year 2002 10 worst 57%

71% 10 best 93%

70% 88%

10 worst 67% 10 best 94%

84%

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

Preliminary Findings: Preliminary Findings: BarriersBarriers

Parents are being misinformed by hospital staffParents are being misinformed by hospital staff Transportation barriers existTransportation barriers exist ESL barriers existESL barriers exist Lack of hospital resources existLack of hospital resources exist Inefficient tracking among hospitals and Inefficient tracking among hospitals and

personnel for NICU and transfer babies.personnel for NICU and transfer babies. Out-of-state babiesOut-of-state babies Message of need for early detection is often Message of need for early detection is often

not stressed not stressed