Key Findings: Infants with Suspected Hearing Loss May Not Receive Timely Diagnosis or Early Intervention
An American Journal of Perinatology article, “Provider Perspectives: Identification and Follow-Up of Infants who are Deaf or Hard of Hearing,” describes barriers to identifying and following up with infants with hearing loss and suggests strategies to increase the number of children with hearing loss identified early.
The EHDI 1-3-6 Benchmarks
It is recommended that all babies are screened for hearing loss no later than 1 month of age.
If a baby does not pass the hearing screening, it is important that they get a diagnostic hearing test and evaluation by a hearing specialist as soon as possible, by no later than 3 months of age.
Intervention services are recommended for children diagnosed with hearing loss, beginning as early as possible but no later than 6 months of age.
Without timely screening, diagnosis, and intervention, hearing loss can cause significant delays in a child’s speech, language, social, and emotional development. Recommended Early Hearing Detection and Intervention (EHDI) benchmarks include screening for hearing loss before 1 month of age, diagnostic evaluation before 3 months of age, and enrollment in early intervention before 6 months of age, known as the 1-3-6 plan.
Nationally, 1 in 4 infants who do not pass their newborn hearing screen are missed due to loss to follow-up (LFU), when an infant needs a recommended service but does not receive it, or loss to documentation (LTD), when an infant receives services but the information is not reported to the state. This means public health professionals do not know whether these infants are receiving timely services. In 2019, Texas had nearly twice the average rate of LFU or LTD among infants who did not pass their newborn hearing screening compared to the United States overall (51.1% vs. 27.5%).
To understand barriers to follow-up and reporting, CDC and staff from the Texas Department of State Health Services led an investigation to understand challenges related to LFU/LTD and identify potential opportunities to reduce LFU/LTD among infants in need of diagnostic or early intervention (EI) services from the provider perspective. The CDC team interviewed 56 healthcare providers in Texas along the hearing care continuum, including hospital newborn screening staff, audiologists, physicians, and early intervention program staff.
Providers identified 11 barriers to identifying and following up with infants with hearing loss, each falling under one of five themes.
Theme 1: Coordination Across the Continuum of Care
- Problems with communication and referrals (problems with referrals; lack of consistency across providers; communication challenges)
- Lack of provider time (lack of time for reporting or seeing patients)
- Logistical difficulties related to personnel and equipment (difficulties with personnel or equipment; paper medical records are a challenge for online reporting; lack of personnel)
- Problems using the online reporting system (non-user-friendly interface; difficulty finding patients in the system)
“Some audiologists won’t see the patient until after 6 months because they’re so inundated. They’re so inundated with so many patients, they can’t fit them in. So now what happens to that 1-3-6 rule? It’s out the door.” – Provider
Theme 2: Geography and Access
- Difficulty contacting families (problems with patient name and address changes)
- Challenges with access to care (challenges related to distance to services; getting timely appointments; language, immigration/border issues; limited number of providers; poverty; rurality; transportation; school and part C EI hours do not match up making it difficult for children to receive care)
“I think we have a number of patients who probably are hard of hearing that we identify late because … we couldn’t get ahold of them or they kept canceling their appointments … And then we see them at 4 or 5 [years of age] because they’re starting school programs and they’re speech delayed and they aren’t communicating.” – Provider
Theme 3: Education and Training
- Lack of provider knowledge surrounding 1-3-6 guidelines and best practices (lack of knowledge surrounding 1-3-6 guidelines and best practices; hearing loss may be missed or a secondary concern among infants with CMV or other developmental delays)
- Lack of parental knowledge (lack of knowledge about the importance of timely identification and intervention)
“That family was … totally and completely in denial and did not agree to pick up services at all … When the child got to kindergarten … they realized how desperate the situation was for their child.” – Provider
Theme 4: Insurance
- Problems with insurance reimbursement (Medicaid reimbursement is slow or insufficient; referrals are insurance-dependent which makes referral process more complicated)
- Problems with insurance coverage (difficulty finding Medicaid providers that will cover hearing aids; patients lack insurance)
“I’d say four out of five times when they refuse, it’s because their insurance covers it here and it does not cover it in the hospital … I really think that is a travesty.” – Provider
Theme 5: Confidentiality
- Lack of reporting or providing services due to perceptions of patient confidentiality requirements (providers unable to access or report patient data because of consent issues)
“We may know about a family but if we’re going through the proper channels we cannot get [the names of children] until [we have] the consent [of parents].” – Provider
About this Investigation
- Provider interviews were conducted during a 3-week investigation period in 2018.
- Providers represented both urban (Austin) and rural (Tyler and Brownsville) geographic areas.
- Results are not representative of the entire state of Texas or of specific regions and provider types within Texas.
What Can Be Done
Families, pediatric healthcare providers, and hearing specialists all play a role in getting a child’s hearing assessed in a timely manner and can help ensure prompt enrollment in intervention when necessary.
This investigation provides insight into strategies that can help further increase the number of children identified early who may benefit from early intervention services, including
- Linking data from multiple sources. Health departments could consider linking data in the online reporting system (including information on infants not passing their newborn hearing screen) to claims data. This would tell us more about child hearing-related outcomes and could allow for more targeted follow-up with providers and families of children who may not be receiving needed services.
- Embedding provider champions. Professional organizations, such as the American Academy of Pediatrics, could augment state outreach efforts through advocacy and education, reaching a larger number of providers.
- Addressing access barriers. Public health professionals and policy makers could consider reviewing Medicaid provider reimbursement policies and practices to address barriers Medicaid patients living in rural areas are experiencing in finding local providers who could dispense hearing aids.
- Sharing accurate information about patient confidentiality requirements. Consent requirements should not limit referrals to services. Health departments could consider working with their state legal departments to develop resources (e.g., fact sheets) for hospitals and birthing facilities that summarize optimal newborn screener requirements regarding confidentiality protections and sharing of information that permits public health practice.
- Provider Perspectives: Identification and Follow-Up of Infants who are Deaf or Hard of Hearing – PubMed (nih.gov)
- Ways to Improve Timely Hearing Interventions in Infants (medscape.com)
- Facts about Hearing Loss
- Hearing Loss in Children Homepage
- Educational Materials
- Podcast in English [PODCAST – 10:46 minutes] or in Spanish [PODCAST – 13:11] on Early Hearing Detection and Intervention