Public health agencies, in conjunction with Early Hearing Detection and Intervention (EHDI) programs, monitor the results of newborn screening outcomes, newborns with risk factors for the late onset of hearing loss, the prevalence of confirmed hearing loss, the type and degree of these losses, and the number of babies enrolled in services. A public health system is the best way for all of the parties providing hearing care to a child to have access to the results of the provided care.
The system is only as good as the data entered, however. A child’s history is critical to providing proper care. We all know that relying on parental reporting alone can create gaps in a case history. As an audiologist, you have an ethical obligation to adhere to appropriate screening and follow-up protocols for every infant, every time.
Hearing loss is considered a developmental emergency (AAP, 2019; Wycoff, 2013). That is why providing timely guidance, therapy, and psychosocial support are critical. Loss-to-follow-up and loss-to-documentation are barriers that prevent EHDI programs from achieving their mission.
Public health systems work daily to increase the number of infants who receive timely care. It takes a village to manage a child’s hearing care. The goal of every Department of Health is to ensure that babies in need are provided with all of the services to which they are entitled.
Based on research, the Centers for Disease Control and Prevention (CDC) recommends EHDI programs implement the “1-3-6 timeline,” which aims for all infants to receive a hearing screening by one month of age, diagnosis by three months of age, and enrollment in early intervention by six months of age (Yoshinaga-Itano et al, 1998). The EHDI program and its information system (EHDI-IS) can play a pivotal role in improving patient outcomes, regardless of the type of intervention a family chooses.
Before the Infant Enters Your Office
Know the newborn hearing screening results.
A parental or caregiver report is not always accurate. EHDI-IS store the results of the newborn screening. Care delivered in accordance with the Joint Committee on Infant Hearing (JCIH) position statement requires that an audiologist have some pre-existing information about the infant they are seeing (JCIH, 2007).
Make sure you are taking the next correct step in the infant’s hearing care.
Having access to an infant’s newborn hearing-screening record is indispensable to schedule the correct appointment type and not lose valuable time in the EHDI process. Access to accurate records is crucial. The EHDI-IS allows
- A review of the type of screening technology that was used: otoacoustic emissions (OAE) or automated auditory brainstem response (AABR)
- An assessment of the number of screenings received
- A review of the pattern of pass/refer responses for both ears
It is important to track down results and understand the full picture of an infant’s hearing history. You must have information about a child’s birth screen to effectively rescreen. It is important to know how many times an infant has been screened and the method of screening used.
- If an infant has already been screened at two facilities, the next step should be a diagnostic evaluation. If the infant was only screened as an inpatient in the hospital, it may be reasonable to perform a rescreen.
- If an infant was referred on an AABR screening, the recommendation is typically not to rescreen with OAE but rescreen using AABR or perform a diagnostic evaluation.
- Best practice tells us that no infant should receive more than three total screens, regardless of type (AAP, 2014).
- An infant who was in the neonatal intensive care unit (NICU) should never receive an outpatient rescreen, but instead should be seen for a diagnostic evaluation.
Have a full understanding of the infant’s medical history.
A careful review of an infant’s prior record can help the audiologist build a full picture of their risk profile for hearing loss. Are risk factors present? Was this infant admitted to the NICU?
The audiologist will need to confirm this information with the family during the appointment because it may have significant implications for follow-up recommendations, regardless of the findings on diagnostic assessment. Again, relying on only a parental or caregiver report does not always provide the most accurate data. The audiologist should report any new risk factors for late onset or progressive hearing loss that may have come to light, such as a new diagnosis of congenital cytomegalovirus (CMV) or identification of a syndrome associated with hearing loss.
Review beneficial information from the case notes.
Case notes reveal qualitative information needed to deliver family-centered or culturally-appropriate care. Families’ preferences and values differ. Taking the time to read a child’s case notes prior to his or her appointment helps communicate respect for the family. An important consideration noted here may be their preferred language, which will determine if a translator is needed. This information may not be marked clearly on the physician referral form, but can have huge implications for the success of the diagnostic appointment.
Confirm the pediatrician.
Often, when babies are discharged, they are assigned the attending pediatrician in the hospital. The family may not have selected their final pediatrician when they are discharged. This is an area where the audiologist can assist the EHDI program by entering the current pediatrician of choice into the EHDI-IS. In some states, legislation makes the pediatrician accountable for the child’s hearing care. Therefore, the correct pediatrician must be able to access the child’s hearing results.
During the Appointment
Clarify information that is critical to the infant receiving the best hearing care.
By using the EHDI-IS, you are informed. Taking the time to read a child’s case notes prior to his or her appointment helps communicate respect for the family and the time they have taken to attend a diagnostic appointment. At the beginning of the appointment, if possible, clarify information from the EHDI-IS with the family and collect details that may need to be added or updated, for various reasons:
- A pediatrician may have changed.
- In the intervening period, the family may have been seen by another ear, nose, and throat (ENT) doctor or audiologist, whose results have not been noted in the record.
- New risk factors for late onset or progressive hearing loss may have come to light, such as a new diagnosis of congenital CMV or identification of a syndrome associated with hearing loss.
- If an inaccuracy is present in the original record, this is the time to amend it.
Reduce duplication of services.
There are times when the careful use of the EHDI-IS can prevent a duplication of services and may help families avoid unnecessary exposure to sedation. Many infants who enter the foster care system may not come with their original birth records with them and, as a result, may be sent on for a baseline hearing assessment. If enough birth information can be gathered, it is often possible to find an infant’s newborn hearing-screening record. If the result was a passing score for hearing, we are able to document that status for his or her new care team and avoid unnecessary testing. This reiterates our commitment to the right level of care at the right time.
Differentiate between late onset of hearing loss, progressive hearing loss, and hearing loss missed at birth due to loss-to-follow-up
Because these situations will have very different developmental implications, it is important to find and document newborn hearing-screening status for a first identification of hearing loss at any age.
This information may be difficult to obtain if the family has moved to a new city/state or changed health-care providers. Additionally, it can be difficult to access hospital birth records directly from hospitals or stand-alone audiology practices.
The EHDI-IS provides a secure link to track a child’s early hearing health-care experience, regardless of the clinical practice site. Often, states will work together to assist in tracking down this information.
We have unearthed newborn hearing-screening results for children as old as 12 years of age who were just receiving their first formal diagnosis of hearing loss. These children were screened multiple times in their infancy, with no formal diagnosis or proper follow-up.
Conversely, access to birth records has helped to corroborate a family’s impression that a child seemed to hear normally just after birth, with records of a passed newborn hearing screening they could not otherwise remember.
No screening algorithm is perfect and each will result in false negatives and false positives from time to time. However, they remain the best tool to distinguish hearing loss from hearing within normal limits.
What information does the Department of Health need from the audiologist?
In order for the Department of Health to assist the child, their family, and the audiologist, the following information is needed:
- The infant’s current name (names can change after delivery)
- The caregivers’ current contact information (sometimes even the family member who cares for the child has changed since delivery)
- Known risk factors
- The primary care provider (often this is not determined before discharge from the hospital)
- The child’s hearing status per ear, based on Centers for Disease Control reporting requirements
- Appointment date
- Audiologist name
- Audiology facility name and phone
- Hearing confirmation
- Within normal limits, hard of hearing/deaf, not yet classified
- Working diagnosis
- Type: Transient conductive, permanent conductive, mixed, sensorineural, auditory neuropathy spectrum disorder (ANSD), not yet determined
- Degree: Slight, mild, moderate, moderately severe, severe, profound, not yet determined
- Test battery used for hearing confirmation
- ABR, auditory steady state response (ASSR), OAE, tympanometry, acoustic reflex thresholds
- No further evaluation required, monitor for late onset, return for further evaluation
After the Appointment
Ensure the infant is receiving the services they are entitled to by communicating the results.
Following a diagnostic or hearing aid appointment for a child younger than age three, a pediatric audiologist should enter the following results into the EHDI-IS:
- ABR or behavioral thresholds, including bone conduction when available
- OAE findings
- Tympanometry results, including probe frequency
- A brief overview of the findings, including otoscopy
- Recommendations and any testing notes that might be important. For example, was the ABR in conjunction with pressure equalization (PE) tube placement or was the infant’s sleep state very light?
- If the family is being referred to other providers, add those providers to the child’s record.
Sometimes, the gathered hearing data does not provide sufficient information to reliably determine the type or degree of the hearing loss. Not yet determined should only be used when very limited information is obtained, for example, tympanometry results only.
If the child has been identified as having a hearing loss, but the audiologist is unsure of the exact degree and type, it is better to have him or her enrolled in services than it is to classify the child as not yet determined. A child with a transient conductive hearing loss is still at risk.
The concern of ruling the hearing loss out is not the best reason to prohibit the child from the services provided by the state. That floating classification in the EHDI-IS must be a call to further action, not a reason to delay care.
Ensure that everyone involved in the infant’s hearing care is up to date.
For an infant with normal hearing, entering data into the EHDI-IS is as simple as entering results and checking the record is up to date. This gives other providers the information needed to discharge the infant from their caseload.
Continue ongoing monitoring and surveillance for the late onset of hearing loss.
Please do not forget that hearing loss can occur at any time. Ongoing monitoring and surveillance are warranted if an infant exhibits hearing within normal limits, but risk factors for hearing loss exist. Learn all of the risk factors and especially monitor the set of JCIH-identified risks requiring heightened attention. When you are seeing older children, check the EHDI-IS for risk factors.
Review for referral to early childhood intervention.
The EHDI-IS may reveal if the family has already been referred for early intervention, or if needed, direct you to the correct agency for referral. The goal of comprehensive reporting is prompt and appropriate intervention services to prevent developmental delays in vocabulary, communication, and cognitive skills.
The Good News
Thanks to EHDI programs, we are putting children and families in touch with the services they need for success. The American Speech-Language-Hearing Association (ASHA) recently conducted a survey of school-based audiologists, asking where they ranked Individuals with Disabilities Education Act (IDEA) issues by importance (ASHA, 2018). Early intervention was ranked as the most important, followed by early childhood connection with the EHDI program.
Accurate and timely contact with the state EHDI-IS is paramount. We are only as good as the audiologists who make up our EHDI systems.