Using Birth Certification to Using Birth Certification to Reach Families lost to Reach Families lost to

Hearing Screening Follow-upHearing Screening Follow-up

Jeffrey Duncan, M.S.Director, Office of Vital Records and Statistics

Rich Harward, Au.D.Utah EHDI DirectorCHARM Program Manager

Utah Department of Health

Birth certificate searches by age, Utah births, 2006

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A Missed Opportunity

CHARMCHARM

CHARM Integration

Infrastructure

EHDIBirth

Certificate

ImmunizationRegistry

Early Intervention

Child Health Advanced

Record Management

MetabolicScreening

BirthDefectsRegistry

Early Hearing Detection and Early Hearing Detection and Intervention (EHDI)Intervention (EHDI)

A state public health program supported by CDCA state public health program supported by CDCEHDI promotes screening, evaluation and early EHDI promotes screening, evaluation and early intervention for hearing lossintervention for hearing loss1-3-6 Plan1-3-6 Plan– Identify hearing loss at 1 month of ageIdentify hearing loss at 1 month of age– Diagnose hearing loss at 3 monthsDiagnose hearing loss at 3 months– Begin Early Intervention by 6 months Begin Early Intervention by 6 months

Birth Certificate ProjectBirth Certificate Project

Can a data system help identify children Can a data system help identify children who are lost to follow-up?who are lost to follow-up?

98% screened for hearing loss at birth 98% screened for hearing loss at birth 2% missed / not screened (1,100+)2% missed / not screened (1,100+)

deceased, moved, non residents, deceased, moved, non residents, transferstransfers

5.5% referred - 35% - 40% unknown (1,300+)5.5% referred - 35% - 40% unknown (1,300+)

Home births (750+)Home births (750+)

40% apply for BC within 1 year40% apply for BC within 1 year

Why is Early Identification Why is Early Identification of Hearing Loss so of Hearing Loss so

Important?Important?

Hearing loss occurs more frequently than Hearing loss occurs more frequently than any other birth defect or condition for any other birth defect or condition for which population-based screening is done.which population-based screening is done.

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““Blindness separates people from Blindness separates people from things. Deafness separates people things. Deafness separates people

from people.”from people.” - - - Helen Keller- - - Helen Keller

Background – Background – Newborn Hearing Newborn Hearing ScreeningScreeningEvery year, 12,000 parents in the U.S. are Every year, 12,000 parents in the U.S. are told that their otherwise healthy infant has a told that their otherwise healthy infant has a hearing loss.hearing loss.

Of these, 5-10% will have a profound loss.Of these, 5-10% will have a profound loss.

95% of children born with a hearing loss 95% of children born with a hearing loss are born to parents with normal hearing.are born to parents with normal hearing.

Hearing loss interferes with the ability to Hearing loss interferes with the ability to develop and understand speech and develop and understand speech and languagelanguage

– Language and education achievement are not Language and education achievement are not related to degree of hearing loss, but rather to related to degree of hearing loss, but rather to the age of identification of hearing loss.the age of identification of hearing loss.

90% of very young children’s knowledge is 90% of very young children’s knowledge is acquired through “incidental learning”acquired through “incidental learning”

Spring is my favorite season. The sun shines bright. The

flowers begin to grow. I like spring.

Link VR to EHDI through CHARMLink VR to EHDI through CHARMBC Clerk requests certificateBC Clerk requests certificate

Automatic data search through CHARM (matching Automatic data search through CHARM (matching algorithm)algorithm)

BRN and demographicsBRN and demographics

Match confirmed and infant needs F-UMatch confirmed and infant needs F-UOLIVER generates BC and HS letterOLIVER generates BC and HS letter

March, 2007 through October, 2007March, 2007 through October, 2007

MethodologyMethodology

MethodologyMethodology

Subjects were randomized into 3 groups:Subjects were randomized into 3 groups:

Letter with BC – Letter with BC – onlyonly

Letter with BC and follow-up Letter with BC and follow-up letterletter

Letter with BC and follow-up Letter with BC and follow-up phone callphone call

Sample Letter Given to Parents Along With Certified Birth CertificateSample Letter Given to Parents Along With Certified Birth Certificate

Paren’ts NameParen’ts Name01/21/200601/21/20062006 039352006 03935  Dear parent/guardian:Dear parent/guardian:  This letter is to remind you that your child did not pass the newborn hearing screening at birth, and should have an additional This letter is to remind you that your child did not pass the newborn hearing screening at birth, and should have an additional hearing test. Newborn hearing screening is usually completed before your baby is discharged from the hospital, but hearing test. Newborn hearing screening is usually completed before your baby is discharged from the hospital, but occasionally some children need to have a hearing test done after they leave the hospital. It is very important that your child occasionally some children need to have a hearing test done after they leave the hospital. It is very important that your child complete this testing.complete this testing.  For help finding hearing screening follow-up services for your child, or if you have already taken your child for a second For help finding hearing screening follow-up services for your child, or if you have already taken your child for a second hearing screening, please call Utah’s Newborn Hearing Screening program at:hearing screening, please call Utah’s Newborn Hearing Screening program at:  

(801) 584-8215(801) 584-8215  

or toll free or toll free  

1 (800) 829-8200 option 5 1 (800) 829-8200 option 5  You may also call if you have any other questions about newborn hearing screening.You may also call if you have any other questions about newborn hearing screening.  Sincerely,Sincerely,  Richard S. Harward, DirectorRichard S. Harward, DirectorEarly Hearing Detection and Intervention ProgramEarly Hearing Detection and Intervention ProgramUtah Department of HealthUtah Department of Health

ResultsResults

ResultsResults

Alert type Alert type NN Completed / Completed / in-processin-process

Change from Change from control groupcontrol group

Control groupControl group

(2006 data)(2006 data)

733733 53 (7%)53 (7%)

BC Alert onlyBC Alert only 8686 35 (43%)35 (43%) 36%36%

BC Alert and BC Alert and letterletter

1919 7 (37%)7 (37%) 30%30%

BC Alert andBC Alert and

phonephone

2121 15 (71%)15 (71%) 64%64%

Additional AlertsAdditional Alerts

Alerts received through CHARM:Alerts received through CHARM:

Name changeName change 8484

BRN changeBRN change 1010

Death alertsDeath alerts 1212

The study identified:The study identified:

Unilateral SNHL (1)Unilateral SNHL (1)

Bilateral SNHL (2) Bilateral SNHL (2)

Abnormal ABR (1)Abnormal ABR (1)

QUESTIONSQUESTIONS

Contact information:Contact information:

Rich Harward Rich Harward rharward@uah.govrharward@uah.gov

Christine Perfili CPERFILI@utah.gov Christine Perfili CPERFILI@utah.gov

Stephen Clyde Stephen Clyde swc@mdsc.govswc@mdsc.gov

Jeffrey Duncan JDUNCAN@utah.govJeffrey Duncan JDUNCAN@utah.gov