Progress in Identifying Infants with Hearing Loss

United States, 2006 - 2012

Tonya R. Williams, PhD; Suhana Alam, MPH; Marcus Gaffney, MPH

Disclosures

Morbidity and Mortality Weekly Report. 2015;64(13):351-356. 

In This Article

Abstract and Introduction

Introduction

Congenital hearing loss affects one to three of every 1,000 live born infants[1] and negatively impacts children through delayed speech, language, social, and emotional development when undetected.[2,3] To address this public health issue, jurisdiction-based Early Hearing Detection and Intervention (EHDI) programs are working to ensure all newborns are screened for hearing loss, receive follow-up diagnostic testing (DX) if they do not pass the screening, and are enrolled in early intervention (EI) services if diagnosed with a permanent hearing loss. Although substantial progress has been made in the provision and documentation of services, challenges remain because, unlike screening results, diagnostic test results and enrollment in EI are not consistently reported to the EHDI programs. Therefore, it is difficult for states and territories to know if infants received recommended follow-up services (diagnostic testing and/or EI services), often resulting in infants being classified at either stage as lost to follow-up (LFU)/lost to documentation (LTD). To assess progress toward identifying children with hearing loss and reducing LFU/LTD for DX (LFU/LTD-DX) and EI enrollment (LFU/LTD-EI*), CDC analyzed EHDI surveillance data for 2006–2012. Results indicated that the number of jurisdictions reporting data increased from 49 to 57, rates of screening increased from 95.2% to 96.6%, rates of referral from screening decreased from 2.3% to 1.6%, rates of diagnosis among infants not passing their final screening increased from 4.8% to 10.3%, and enrollment in EI among children diagnosed with hearing loss increased from 55.4% to 61.7%, whereas rates for both LFU/LTD-DX and LFU/LTD-EI declined. These findings show sustained progress toward screening, identification, and enrollment in EI as well as highlighting the need for continued improvements in the provision and documentation of EHDI services.

Data were gathered by using the EHDI Hearing Screening and Follow-up Survey (HSFS), which was fully implemented starting in 2006. This survey is sent annually to the EHDI program coordinator in each U.S. state, the District of Columbia, and each participating territory and freely associated state. The HSFS requests nonestimated, aggregate information about the receipt of hearing screening, diagnostic testing, and EI for every occurrent birth within the jurisdiction. The numbers of occurrent births are compared for accuracy with data from the jurisdiction's Vital Records program and the National Vital Statistics System. Infants were classified as LFU/LTD-DX or LFU/LTD-EI if they did not receive recommended follow-up services or if they received services without the results being reported to the jurisdictional EHDI program. LTD can occur because the results of diagnostic testing and enrollment in EI are not universally required to be reported. Although strategies used to target LFU and LTD differ, these two categories are grouped together in the HSFS because it is problematic for most programs to differentiate between these different types of cases. The denominators for LFU/LTD-DX and LFU/LTD-EI used by CDC are total infants not passing the final hearing screening and total infants identified with a permanent hearing loss, respectively. More details about the HSFS and data definitions have been published.[4,5] The reasons for being LFU/LTD listed in the HSFS include the following: the parents/family were contacted but unresponsive, unable to contact, and unknown. Cases in which the infant died, the parents refused services, or the parents moved were not classified as LFU/LTD.

Data for this report are based on the HSFS conducted for the years 2006–2012, using aggregate jurisdiction-reported totals. Some jurisdictions did not respond to the HSFS in ≥1 years because completion of the survey is voluntary, the requested data were not available at the time of reporting, or another reason. Data for individual years and data at the jurisdictional level are available online.§ Eighty-three percent of jurisdictions responded to the survey in 2006, and 97% responded in 2012. Information was excluded if, after consultation with a jurisdictional EHDI program, the reported data were found to be incomplete or derived from estimated information. Because some jurisdictions did not respond to the survey in ≥1 years, there are differences in the number of jurisdictions reporting each year.

In 2012, an average of 96.6% of newborns were screened for hearing loss compared with 95.2% in 2006 ( Table 1 and Table 2 ). Overall, the number and average percentage of those infants that did not pass the hearing screening and were subsequently diagnosed with a permanent hearing loss increased from 4.8% (3,261) to 10.3% (5,475). The proportion of infants identified with hearing loss increased from 1.1 to 1.6 per 1,000 infants screened (Figure). For those infants with a confirmed, permanent hearing loss, an average of 61.7% were documented as receiving EI in 2012 compared with 55.4% in 2006 ( Table 1 and Table 2 ). The average percentage of LFU/LTD-DX decreased from 47.7% to 35.9%, and the average percentage of LFU/LTD-EI decreased from 40.3% to 24.6% (Figure).

Figure.

Prevalence of infants identified with hearing loss and percentage of those infants who were lost to follow-up/lost to documentation (LFU/LTD) for diagnostic testing (DX) or for early intervention (EI) — United States, 2006–2012

Based on available data from the HSFS, a number of jurisdictions have made progress in documenting the diagnosis of infants with permanent hearing loss and their enrollment in EI. For example, 10 jurisdictions had an improvement of at least 10% for diagnosed hearing loss among infants who did not pass the hearing screening ( Table 1 and Table 2 ). Seventeen jurisdictions had at least a 10% improvement in infants enrolled in EI. In addition, 12 jurisdictions had a 30% decrease in LFU/LTD-DX, and 12 jurisdictions had at least a 30% decrease in their LFU/LTD-EI rates.

*Lost to follow-up (LFU) describes an event in which an infant needs a specific follow-up action but does not receive it. LFU for diagnosis (LFU-DX) occurs when an infant does not pass the hearing screening, is referred for diagnostic testing by a qualified provider (e.g., an audiologist) but never receives the testing needed to confirm whether a hearing loss is present. LFU for early intervention (LFU-EI) occurs when an infant diagnosed with a permanent hearing loss is not enrolled in any early intervention services. Lost to documentation (LTD) describes an event in which an infant receives a specific follow-up action, but neither confirmation that the follow-up was provided nor the results are reported to the jurisdictional EHDI program. LTD for diagnosis (LTD-DX) occurs when an infant not passing the hearing screening does receive follow-up testing that either confirms a hearing loss or does not identify any loss but this information is not reported to the jurisdictional EHDI program. LTD for early intervention (LTD-EI) occurs when an infant diagnosed with a permanent hearing loss is enrolled in early intervention services but this information is not reported to the jurisdictional EHDI program.
In 2006, of those infants needing diagnostic follow-up testing, 998 (2.2%) did not receive it because of parent refusals or infant deaths and 510 (1.1%) because of being nonresidents or moving out of state. In 2012, of those infants needing diagnostic follow-up testing, 2,141 (4.0%) did not receive it because of parent refusals or infant deaths and 1,505 (2.8%) because of being nonresidents or moving out of state.
§Available at http://www.cdc.gov/ncbddd/hearingloss/ehdi-data.html.

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