Health Indicator Report of Newborn Hearing Screening

The Utah lost to follow-up (LTFU) number consists of those children who are "contacted unresponsive", "unable to contact", and "unknown". However, there are many reasons that families do not follow-up for services. Those "other" include: "in process" (e.g., need pressure equalization tubes for chronic middle ear fluid or on cleft palate repair, etc.), non-resident, moved out of jurisdiction, unable to receive due to medical reasons, primary care physician did not refer, infant died, or the family declined. In 2014 the CDC gave states the option to remove "contacted but unresponsive" from their LTFU numbers, due to the fact that someone within the EHDI system has had 2-way communication with the family and they chose to not follow-up. For both 2021 and 2022, this would give Utah a LTFU rate of 0% (no infants were "unable to contact" or "unknown"). The CDC defines LTFU categories as follows: "contacted unresponsive" - "a documented two-way conversation or written communication with the child's legal parent or guardian in which they have acknowledged awareness and have nevertheless not obtained the recommended service"; "unable to contact" - "the parents or family were not able to be contacted because the EHDI program/hospital/provider did not have any current/correct contact information"; "unknown" - "there is no documentation that they received any follow-up testing and there has been no documented contact with the parents". Not showing on this graph is that the Utah LTFU rate has decreased in recent years. *2010: 67.0% *2011: 55.2% *2012: 54.7% *2013: 31.1% *2014: 13.9%/3.4% removing "parent contacted unresponsive" *2015: 12.2%/3.4% removing "parent contacted unresponsive" *2016: 14.5%/2.0% removing "parent contacted unresponsive" *2017: 9.7%/2.5% removing "parent contacted unresponsive" *2018: 7.7%/2.1% removing "parent contacted unresponsive" *2019: 4.5%/1.4% removing "parent contacted unresponsive" *2020: 4.6%/1.0% removing "parent contacted unresponsive" *2021: 3.9%/0.0% removing "parent contacted unresponsive" *2022: 3.3%/0.0% removing "parent contacted unresponsive" [[br]] [[br]]

Notes

New hearing screening objectives adopted in 2010 therefore trend data begins in 2010.

Data Source

NBHS - HI*TRACK Hearing Screening Tracking and Data Management (C) HI*TRACK, Utah State University

Definition

Screening for hearing loss for newborn infants has been mandated in Utah since 1998. Because half of the children with hearing loss have no family history of deafness or hearing loss, universal screening is conducted to detect children with permanent congenital hearing loss (PCHL) as soon as possible. There is substantial evidence that newborn hearing screening is highly accurate and leads to earlier identification and treatment of infants with hearing loss. Healthy People 2020 Objectives addressed in this report include: * HP 2020 ENT-VSL-1.1 Percentage of newborns who are screened for hearing loss no later than age 1 month. * HP 2020 ENT-VSL-1.2 Percentage of infants who did not pass hearing screening who received audiologic evaluation by age 3 months. * HP 2020 ENT-VSL-1.3 Percentage of infants with confirmed hearing loss enrolled in intervention services no later than age 6 months.

Numerator

ENT-VSL-1.1 Number of newborns screened for hearing loss by one month of age[[br]] ENT-VSL-1.2 Number of newborns who received an audiologic evaluation following failed hearing screening[[br]] ENT-VSL-1.3 Number of infants with confirmed hearing loss enrolled in Early Intervention

Denominator

ENT-VSL-1.1 Number of occurrent births in Utah[[br]] ENT-VSL-1.2 Number of infants referred for audiologic evaluation[[br]] ENT-VSL-1.3 Number of infants with confirmed permanent hearing loss

Other Objectives

{{style color:#003366 ENT-VSL-1.1:}} Increase the proportion of newborns who are screened for hearing loss no later than age 1 month * '''U.S. 2017 Baseline:''' 95.4 percent * '''Utah 2017 Baseline:''' 97.3 percent[[br]] Target to maintain > 95% by 2024.[[br]] [[br]] {{style color:#003366 ENT-VSL-1.2:}} Increase the proportion of newborns who receive audiologic evaluation no later than age 3 months for infants who did not pass the hearing screening * '''U.S. 2017 Baseline:''' 49.2 percent * '''Utah 2017 Baseline:''' 64.8 percent[[br]] Target by 2024 min of 85%, or increase by 10% from baseline.[[br]] [[br]] {{style color:#003366 ENT-VSL-1.3:}} Increase the proportion of infants with confirmed hearing loss who are enrolled for intervention services no later than age 6 months * '''U.S. 2017 Baseline:''' 43.4 percent * '''Utah 2017 Baseline:''' 68.4 percent Target by 2024 min of 80%, or to increase by 15% from baseline.[[br]] [[br]] Targets are from EHDI HRSA Grant 2020-2024.

How Are We Doing?

The Utah Early Hearing Detection and Intervention (EHDI) Program within the Utah Department of Health and Human Services oversees newborn hearing screening in Utah and documents hearing screening on over 99% of newborns. In 2022, 97.3% of all infants born in the state of Utah received a hearing screening prior to one month of age. Of just those infants who received a screening, 98.5% were prior to 1 month (as reported to the CDC EHDI Hearing Screening and Follow-up Survey [HSFS]), an increase from 97.4% reported for 2011 births. Many of the infants with screening delayed past one month are NICU (newborn intensive care unit) infants where screening may not be indicated until discharge (often after one month of age), or home births who may not have access to screening before one month of age. Those infants who failed their most recent screening should have a diagnostic exam with a pediatric audiologist prior to 3 months of age. Infants who received a diagnostic exam prior to three months steadily increased from 19.2% in 2011 to 79.4% in 2022. For infants born in 2022 who received a diagnostic exam, 87.2% were prior to 3 months of age. Infants undergoing diagnostic procedures may receive confirmation of hearing loss after the optimal 3-month "window" although they received one or more diagnostic evaluations before that time. The values reported to the CDC are based on the final or "confirmed" hearing status which could include multiple previous diagnostic exams. Utah continues to have one of the lowest lost to follow-up rates in the nation, even throughout the COVID-19 pandemic, with 2021 overall lost to follow-up at 3.9% vs the national rate of 32.4% (national numbers for 2022 are not yet published).

How Do We Compare With the U.S.?

In 2021, data from the Centers for Disease Control and Prevention (CDC) EHDI showed that 98% of newborns in the United States (48 states, 6 territories, 1 district) were screened for hearing loss, with 95.5% screened by one month of age. Of those infants not passing the hearing screening, 57.6% had a diagnostic evaluation; 42.7% were diagnosed as either having or not having a hearing loss before three months of age. Nationally, we saw a decrease in infants receiving a timely diagnostic exam due to the COVID-19 pandemic, however Utah remained steady, continuing to offer services throughout the pandemic. ''* For data tracking and reporting purposes, those "referred for evaluation" include all infants who did not pass their final hearing screening or went directly to evaluation with no screening. While Utah is a 2-stage screening state, this number includes all infants who did not pass both inpatient and outpatient screens and were referred for diagnostic audiology, as well as those infants who did not pass inpatient screening and did not return for outpatient screening.''[[br]] Of infants "referred for evaluation"* in 2021: * % with no loss ** U.S.: 65.4% ** Utah: 47.4% [[br]] *% with hearing loss ** U.S.: 10.3% ** Utah: 14.8% [[br]] *% overall loss to follow-up ** U.S.: 32.4% ** Utah: 3.9% [[br]] *% loss to follow-up due to "unable to contact/unknown" ** U.S.: 22.7% ** Utah: 0%[[br]] [[br]] *% loss to follow-up due to "contacted unresponsive" ** U.S.: 9.6% ** Utah: 3.9%[[br]] [[br]] National Early Hearing Detection and Intervention (EHDI) data shows that 67.1% of infants born in 2021 with hearing loss who are receiving EI (Early Intervention) services were enrolled prior to six months of age; Utah showed a 87.3% enrollment success rate by six months of age for 2021.[[br]] [[br]] ---- Data source: [https://www.cdc.gov/ncbddd/hearingloss/2021-data/documents/01-2021-HSFS-Data-Summary-h.pdf] Published November 2023.

What Is Being Done?

State legislation requires that ALL newborns, including those born at home, must have their hearing screened by one month of age and results reported to the Utah Department of Health and Human Services. Increased efforts have been focused on providing screening equipment, support, and training for local midwives who collectively birth over 1,000 infants per year. The Utah Newborn Hearing Screening/EHDI Program supports tracking efforts and provides resource information to hospitals, midwives, medical providers, local programs, and families. Improvements in the EHDI tracking surveillance system and decreasing loss to follow-up/documentation has been a priority, as well as matching EHDI data across other state programs (Utah Birth Defects Network, Critical Congenital Heart Defect (CCHD) screening, Vital Records, etc.). Implementation of the Birth Certificate Alert Program, in collaboration with local health departments, began statewide in 2014. Twenty-six of 29 local health department birth certificate offices are now participating. Alerts to parents applying for their child's birth certificate are generated if their infant has not yet completed the newborn hearing screening process. The Newborn Hearing Screening Committee endorses Healthy People 2020/2030 goals and assesses progress quarterly. The Utah EHDI Program has been working extensively with the Office of Vital Records both to clean and match data, as well as by updating the Birth Certificate Application so that midwives can now enter (September 2020) newborn hearing screening results as they apply for the child's birth certificate. Beginning in 2017 the Utah EHDI Program partnered with Utah Family Voices/Utah Parent Center to employ Parent Consultants to provide support to families who have a child who is deaf or hard of hearing. This has been a valuable partnership providing support to families throughout Utah. Particular emphasis has been put on collaborating with Baby Watch Early Intervention and the Utah Schools for the Deaf and Blind Parent Infant Program to increase enrollment and education in regards to Early Intervention services. In-line with HRSA funding, the EHDI Program is also working to expand technical assistance to Early Childhood screening programs.

Evidence-based Practices

The Utah EHDI program follows all of the best practice guidelines within this document: Year 2019 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs [[br]] [https://digitalcommons.usu.edu/cgi/viewcontent.cgi?article=1104&context=jehdi]

Available Services

Resources for families and providers on deafness and hearing loss, state requirements, intervention services, and related handouts are available at [https://familyhealth.utah.gov/ehdi]. For regional resources for hearing screening and diagnostic services for newborn and infants: [https://arcg.is/n4HmC] Families of infants identified with permanent hearing loss are offered targeted services for deaf and hard of hearing children birth through 3 years of age through the Baby Watch Early Intervention Program ([https://familyhealth.utah.gov/oec/baby-watch-early-intervention/ BWEIP]) and the Utah School for the Deaf Parent Infant Program ([https://www.usdb.org/programs/deaf-and-hard-of-hearing/ USDB]). Families in need of parent-to-parent support upon initial diagnosis or at any point throughout the EHDI process may contact EHDIparents@utah.gov. For up-to-date resources and community happenings, interested parties can follow the Utah EHDI Family Support and Information Facebook page (@UtahEHDI). The Utah Parent Center helps all families no matter their child's diagnosis. For more information, visit [https://utahparentcenter.org]. The Utah Children's Hearing Aid Program (CHAP) provides access to hearing aids to children 17 years of age or younger for financially eligible families. For more information and/or to apply, visit [https://familyhealth.utah.gov/CHAP].