The American Academy of Otolaryngology- Head and Neck Surgery (AAO-HNS) has long recognized the critical nature of timely universal newborn infant hearing screening (NIHS) to promote early identification and intervention for children with congenital hearing loss. Previously, the Joint Commission on Infant Hearing (JCIH) has recommended specific benchmarks with the development of the “1-3-6 paradigm”, which calls for initial screening no later than one-month of age, confirmatory diagnosis of hearing loss by 3 months of age, and enrollment in early intervention no later than 6 months of age. States meeting these guidelines are further encouraged to implement these same benchmarks at 1, 2, and 3 months of age, respectively. While significant state and federal resources have been devoted to the implementation of Early Hearing Detection and Intervention (EHDI) programs to meet these recommendations, there exist significant challenges in the adherence to, validity of, funding, reporting, and follow-up with respect to these guidelines:
- There are significant intrastate and interstate EHDI program discrepancies in the accurate reporting of demographic data, dates of diagnostic and therapeutic encounters, and recorded prevalence of congenital hearing loss, undermining programs’ ability to determine rates of follow-up as well as identify risk factors contributing to loss to follow-up. In addition, programs consistently fail to record accurate data from infants of vulnerable populations or from infants with complex or transitioned care (i.e. – those transferred to different centers, those born in other states, and those who spent time in the neonatal ICU; these groups are often those infants at the highest risk of delayed diagnosis and/or treatment of congenital hearing loss. (Bush et al, Deng et al, Sanchez-Gomez et al)
- The measures of hearing loss diagnosis by age 3 months have been well-established; however, the definition and the reporting of the timing of intervention in the setting of infant hearing loss (typically an individualized family service plan) have been inconsistent. These EHDI programmatic weaknesses jeopardize the ability for the system to follow individuals through the course of their care. Thus, we know the least about those children who do not meet the earliest benchmarks. (Deng et al, Nicholson et al)
- While most recent Centers for Disease Control (CDC) data on all EHDI programs for children born in 2019 demonstrate robust newborn hearing screen rates, rates of diagnosis by 3 months, and enrollment in early intervention programs vary widely between and within each state. (2019 Summary of National CDC EHDI Data)
- Even where these benchmarks are reliably tracked, there are significant disparities in achieving these benchmarks for infants who have additional risk factors, including possession of public/no insurance, those born to teenage mothers or mothers with less than college degree, those who live in rural settings, or who are non-white (for example, African-American children demonstrate higher rates of loss to follow-up compared to white children (Bush et al, Crouch et al, Cunningham et al, Deng, Ema et al)).
It is, therefore, incumbent upon otolaryngologists to engage EHDI programs, on a state and national level, to enforce and promote the execution of the JCIH guidelines, especially in cases where health-based, medical, geographic, or socioeconomic risk factors are present, or due to inequitable systems of care. It is also our responsibility to serve as stewards in meeting JCIH benchmarks within our own practices and healthcare systems. While we recognize the need for thoughtful reexamination of these programs, this will require continued work with stakeholders across our many disciplines and with uniform adoption through state and federal bodies.
References
(2019). Year 2019 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs. Journal of Early Hearing Detection and Intervention, 4(2), 1-44. DOI: https://doi.org/10.15142/fptk-b748
Alam S, Satterfield A, Mason CA, Deng X. Progress in Standardization of Reporting and Analysis of Data from Early Hearing Detection and Intervention (EHDI) Programs. J Early Hear Detect Interv. 2016;1(2):2-7. PMID: 27840852; PMCID: PMC5102258.
Bush, Matthew L., et al. “Delays in diagnosis of congenital hearing loss in rural children.” The Journal of pediatrics 164.2 (2014): 393-397.
Crouch, E. L., Probst, J., Bennett, K. J., & Carroll, T. (2017). Evaluating loss to follow-up in newborn hearing screening in a southern state. Journal of Early Hearing Detection and Intervention, 2(1), 40–47. https://doi.org/10.15142/T3T33Z
Cunningham, M., Thomson, V., Mckiever, E., Dickinson, L. M., Furniss, A., & Allison, M. A. (2018). Infant, maternal, and hospital factors’ role in loss to follow-up after failed newborn hearing screening. Academic Pediatrics, 18(2), 188–195. https://doi.org/10.1016/j.acap.2017.05.005
Deng, X., Ema, S., Mason, C., Nash, A., Carbone, E., & Gaffney, M. (2020). Receipt and timeliness of newborn hearing screening and diagnostic services among babies born in 2017 in 9 states. Journal of Public Health Management and Practice, 28(1), E100–E108. https://doi.org/10.1097/PHH.0000000000001232
Deng, Xidong, Terese Finitzo, and Subhash Aryal. “Measuring Early Hearing Detection and Intervention (EHDI) quality across the continuum of care.” eGEMs 6.1 (2018).
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Green, Denise R., et al. “Determining the effect of newborn hearing screening legislation: an analysis of state hearing screening rates.” Public Health Reports 122.2 (2007): 198-205.
Nicholson, Nannette, Ellen A Rhoades, and Rachel E Glade. “Analysis of Health Disparities in the Screening and Diagnosis of Hearing Loss: Early Hearing Detection and Intervention Hearing Screening Follow-Up Survey.” American journal of audiology (2022): 1–25. Web.
Sanchez-Gomez MC, Dundon K, Deng X. Evaluating Data Quality of Newborn Hearing Screening. J Early Hear Detect Interv. 2019;4(3):26-32. doi: 10.26077/fz0y-v617. PMID: 31911952; PMCID: PMC6945814.
2019 Summary of National CDC EHDI Data. https://www.cdc.gov/ncbddd/hearingloss/2019-data/01-data-summary.html
Annual Data Early Hearing Detection and Intervention (EHDI) Program. https://www.cdc.gov/ ncbddd/hearingloss/ehdi-data.html.[2020-05-15].
