Recommended Early Hearing Detection and Intervention (EHDI) benchmarks include screening all infants for hearing loss before 1 month of age; diagnostic evaluation before 3 months of age for infants whose screen indicates potential hearing loss; and enrollment in early intervention before 6 months of age for infants with hearing loss. This is known as the EHDI 1-3-6 plan. Without timely screening, diagnosis, and intervention, hearing loss can cause significant delays in a child’s speech, language, social, and emotional development. Early identification and intervention can help the infant and family access helpful support.
Healthcare providers’ reporting of data related to infant screening, diagnosis, and early intervention is essential to ensure that all children with hearing loss receive services as early as possible. But challenges to reporting data to EHDI programs exist. Staff from the Centers for Disease Control and Prevention (CDC) and the Texas Department of State Health Services (TDSHS) worked together to understand barriers to reporting and follow-up.
Here are five things to know.
1. The EHDI 1-3-6 plan is crucial to reducing long-term impacts of early hearing loss on developmental outcomes.
Healthcare providers can help ensure that children who do not pass their newborn hearing screen are diagnosed and enrolled in early intervention by reporting a child’s diagnostic and follow-up data to their state’s EHDI program. State public health departments can use this information to conduct individual outreach to help families better navigate the process of receiving services and to monitor progress in meeting benchmarks for the 1-3-6 plan.
2. More than 1 in 4 US infants who do not pass their newborn hearing screen are lost to follow-up or lost to documentation before receiving a diagnosis.
Lost to follow-up (LFU) occurs when an infant needs a recommended service but does not receive it. Lost to documentation (LTD) occurs when an infant receives services but the information is not reported to the EHDI program. This means that public health professionals do not know whether these infants are receiving timely services. Healthcare providers can help reduce LFU/LTD by ensuring that the results of screening, diagnostic evaluation, and enrollment in early intervention are sent to their state EHDI program at the time those services are performed.
Prior research has found multiple child- and family-related characteristics associated with LFU/LTD, such as having less severe hearing loss or residing in rural areas. Prior research has also shown that many healthcare providers don’t know how to report data to the EHDI program, which contributes to audiology facilities not reporting diagnostic results to EHDI. To better understand factors contributing to LFU/LTD, CDC and TDSHS worked together to learn about healthcare provider perspectives on documenting the steps of the EHDI 1-3-6 plan.
3. CDC investigators are learning how to improve reporting of children’s hearing loss.
The CDC team interviewed 56 healthcare providers in Texas, including hospital newborn screening staff, audiologists, physicians, and early intervention program staff. Healthcare providers shared information about barriers they have experienced to meeting the recommended benchmarks outlined in the EHDI 1-3-6 plan that may contribute to LFU/LTD, as well as ideas about addressing these barriers to improve documentation of the diagnostic and intervention status of infants who did not pass the newborn hearing screening.
4. Healthcare providers reported barriers across several themes.
Theme 1: Coordination Across the Continuum of Care
Problems with communication and referrals (lack of consistency across healthcare providers; communication challenges)
Lack of healthcare provider time (lack of time to see patients or report results)
Logistical difficulties related to personnel and equipment (paper medical records complicate online reporting; lack of personnel)
Problems using the online reporting system (non–user-friendly interface; difficulty finding patients in the system)
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; language barriers, immigration/border issues; limited number of healthcare providers; lack of transportation; school and early-intervention hours do not match up, making it difficult for children to receive care)
Theme 3: Education and Training
Lack of healthcare provider knowledge (limited understanding of 1-3-6 guidelines and best practices; hearing loss may be missed or a secondary concern among infants with congenital cytomegalovirus infection or other developmental delays)
Lack of parental knowledge (limited awareness about the importance of timely identification and intervention)
Theme 4: Insurance and Payment for Services
Problems with insurance reimbursement (Medicaid reimbursement is slow or insufficient; referrals are insurance-dependent, complicating the referral process)
Problems with insurance coverage (difficulty finding Medicaid healthcare providers that will cover hearing aids; patients lack insurance)
Theme 5: Confidentiality Concerns
5. Healthcare providers along the hearing care continuum can work together to formulate strategies to improve care coordination for infants with hearing loss.
Barriers identified by healthcare providers in Texas are probably similar to those in other jurisdictions. To help address the barriers contributing to LFU/LTD and ensure that all children receive the services they need to reach their fullest potential, healthcare providers can:
Engage in educational opportunities to better understand the EHDI 1-3-6 plan and best practices, as well as processes for reporting data to jurisdictional EHDI programs.
Serve as a healthcare provider champion, such as those serving in the American Academy of Pediatrics EHDI Chapter Champion program, to augment state outreach efforts through advocacy and education, reaching a larger number of healthcare providers than possible with limited state resources.
Understand informed-consent requirements and know that seamless referral to support infants with hearing loss is an important healthcare function; consent requirements should not limit referrals to services.
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