Using Birth Certification to Reach Families lost to Hearing Screening Follow-up Jeffrey Duncan, M.S. Director, Office of Vital Records and Statistics Rich Harward, Au.D. Utah EHDI Director CHARM Program Manager Utah Department of Health

A Missed Opportunity

CHARM CHARM Integration Infrastructure EHDI Birth Certificate Immunization Registry Early Intervention Child Health Advanced Record Management Metabolic Screening Birth Defects Registry

Early Hearing Detection and Intervention (EHDI) A state public health program supported by CDC EHDI promotes screening, evaluation and early intervention for hearing loss Plan –Identify hearing loss at 1 month of age –Diagnose hearing loss at 3 months –Begin Early Intervention by 6 months

Birth Certificate Project Can a data system help identify children who are lost to follow-up? 98% screened for hearing loss at birth 2% missed / not screened (1,100+) deceased, moved, non residents, transfers 5.5% referred - 35% - 40% unknown (1,300+) Home births (750+) 40% apply for BC within 1 year

Why is Early Identification of Hearing Loss so Important? Hearing loss occurs more frequently than any other birth defect or condition for which population-based screening is done.

Occurrences per 10,000 births

“Blindness separates people from things. Deafness separates people from people.” Helen Keller

Background – Newborn Hearing Screening Every year, 12,000 parents in the U.S. are told that their otherwise healthy infant has a hearing loss. Of these, 5-10% will have a profound loss. 95% of children born with a hearing loss are born to parents with normal hearing.

Hearing loss interferes with the ability to develop and understand speech and language –Language and education achievement are not related to degree of hearing loss, but rather to the age of identification of hearing loss. 90% of very young children’s knowledge is 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 CHARM BC Clerk requests certificate Automatic data search through CHARM (matching algorithm) BRN and demographics Match confirmed and infant needs F-U OLIVER generates BC and HS letter March, 2007 through October, 2007 Methodology

Methodology Subjects were randomized into 3 groups: Letter with BC – only Letter with BC and follow-up letter Letter with BC and follow-up phone call

Sample Letter Given to Parents Along With Certified Birth Certificate Paren’ts Name 01/21/ 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 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 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 hearing screening, please call Utah’s Newborn Hearing Screening program at: (801) or toll free 1 (800) option 5 You may also call if you have any other questions about newborn hearing screening. Sincerely, Richard S. Harward, Director Early Hearing Detection and Intervention Program Utah Department of Health

Results Results Alert type N Completed / in-process Change from control group Control group (2006 data) (7%) BC Alert only (43%) 36% BC Alert and letter 19 7 (37%) 30% BC Alert and phone21 15 (71%) 64%

Additional Alerts Alerts received through CHARM: Name change 84 BRN change 10 Death alerts 12

The study identified: Unilateral SNHL (1) Bilateral SNHL (2) Abnormal ABR (1)

QUESTIONS Contact information: Rich Harward Christine Perfili Stephen Clyde Jeffrey Duncan