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State EHDI data show high newborn screening but large follow-up gaps, panelist says
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Summary
A Phoenix Children's Hospital physician told the committee Arizona screens about 98% of newborns for hearing but reported substantial loss to follow-up for diagnostic steps—approaching 50% in recent years—and said state data access and privacy concerns limit the committee’s ability to pinpoint where disparities occur.
Dr. Nathan Page, a pediatric otolaryngologist at Phoenix Children’s Hospital and EHDI chapter champion for the Arizona American Academy of Pediatrics, told the committee that Arizona’s Early Hearing Detection and Intervention (EHDI) program meets near‑universal newborn screening rates but struggles to bring infants who "refer" on the initial screen through diagnostic testing and early intervention.
Page reviewed the 1‑3‑6 goals used nationally—screen by 1 month, diagnostic testing by 3 months and early intervention by 6 months—and said states report EHDI data annually to CDC. He said Arizona screens about "98 percent" of newborns but that, among the smaller number who fail the initial screen, the program’s ability to track and complete diagnostic follow-up has degraded since a dedicated state follow-up contract ended. "Those numbers can reach 50% over the last couple of years," he said, describing that figure as the proportion of children who failed an initial screen and did not complete diagnostic steps.
Page and committee members discussed data limitations: the state provided 2019 data for this analysis but declined to share more recent, granular datasets citing privacy and workload concerns; many variables that would help analyze disparities (insurance type, language, specific NICU days, single‑parent households, congenital CMV) are not consistently documented or are left blank in records. Page recommended an organized effort to streamline data requests, align public health databases, and, where feasible, add or improve the collection of race/ethnicity and geographic indicators to identify local pockets of LFU and delayed diagnosis.
The committee discussed operational responses that have previously reduced LFU—contracted follow-up outreach that made multiple calls and scheduled appointments before discharge—and considered options such as mobile screening units, appointment-on-discharge cards, and targeted follow-up in counties with high LFU. No formal vote was taken; the committee asked staff to pursue additional state data and to invite IHS and other stakeholders to comment in future briefings.
