After this course learners will be able to:
- Describe how the EHDI system can be used BEFORE the audiology appointment.
- Describe how the EHDI system can be used DURING the audiology appointment.
- Describe the results and additional information that should be documented in the EHDI system AFTER the audiology appointment.
Early Hearing Detection and Intervention is a Public Health Initiative for Audiology
Over the past few decades, EHDI programs have made great progress in ensuring infants who are deaf or hard of hearing receive care early. Almost 99% of infants receive newborn hearing screening before leaving the hospital. Despite the public health success of EHDI, challenges remain in connecting infants who do not pass a hearing screening to timely and appropriate follow-up. Between 30-50% of infants who need care after a newborn hearing screening are lost to the system.1This could mean an infant is lost to follow-up and does not access the care they need, or it could mean an infant is lost to documentation due to a provider not communicating the outcome of a visit in an EHDI information management system (EHDI-IS).
Loss-to-follow-up and loss to documentation are barriers to EHDI programs achieving their mission. Public health programs work daily to increase the number of infants who receive timely care. EHDI efforts emerged from evidence that infants with hearing loss who enroll in intervention by six months of age are more likely to develop language outcomes on par with their age-matched peers than infants who enroll after six months of age.2 Based on this 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. Public health EHDI coordinators in each state rely on data management systems to receive information about the status of infants along the 1-3-6 continuum of care. Verifiable and timely data inform public health about which families may need care coordination or may be lost to follow-up. When data are missing from the EHDI-IS (lost to documentation), public health professionals are unable to discern if a family truly needs assistance, or if the family has already received necessary care.
The Audiologist’s Role in Reducing Loss to Follow-up and Loss to Documentation
The EHDI system is complex and relies on communication among an interdisciplinary team of providers. Members of the EHDI team may include birth facilities, outpatient providers, physicians, audiologists, speech-language pathologists, early interventionists, and public health EHDI coordinators. Pediatric audiologists are an essential member of the EHDI team because confirmatory diagnostic testing is the only way infants can meet the CDC goal of diagnosis by three months of age. Because data from diagnostic sessions are so valuable, many states have laws that mandate pediatric audiologists report diagnostic information to the public health department. In addition to being a “civic duty”, the care provided at the diagnostic visit, and the data entered into the EHDI-IS help infants who are deaf or hard of hearing reach their full potential by reducing loss to follow-up and loss to documentation.
Reducing Loss to Follow-up
Each interaction with a family is a chance for the pediatric audiologist to assure an infant gets the care they need and is connected to the next step in care. Audiologists can reduce loss to follow-up by:
- Avoiding over screening: The Joint Committee on Infant Hearing (JCIH) recommends an infant receive no more than three hearing screenings.3 If an infant has already received birth screenings and outpatient screenings, confirmatory diagnostic testing (including diagnostic auditory brainstem response testing) is the next step. An infant who has spent time in the NICU and referred on their inpatient AABR screening should never receive an outpatient screening. Unnecessary repeat screenings delay diagnosis of hearing loss and increase the risk of loss to follow-up by requiring a family to return for additional visits. The pediatric audiologist should ensure all infants are scheduled for diagnostic testing as soon as possible.
- Referring to early intervention after diagnosis: After diagnosis, families will begin to consider communication and intervention options. The audiologist can reduce loss to follow-up by discussing intervention options and making a referral to early intervention as soon as confirmatory testing is complete.
- Fitting appropriate hearing technology as soon as possible: For families who elect to use hearing technology, the audiologist can reduce loss to follow-up by fitting hearing technology at the first available visit. Consider making ear mold impressions at the end of the diagnostic testing to reduce the time between diagnosis and hearing aid fitting. Additionally, the pediatric audiologist should use best practices for pediatric hearing aid fitting such as those recommended by the American Academy of Audiology to assure an appropriate programming and fit with fewer visits.4
Reducing Loss to Documentation
In addition to providing high-quality care, the pediatric audiologist can assist in an EHDI program by using the state’s EHDI-IS to report diagnostic and habilitation information. If diagnostic data are not entered in the EHDI-IS, the public health EHDI coordinators and care coordinators do not have a complete picture of an infant’s status along the 1-3-6 continuum of care. The lack of data could result in public health efforts being allocated to families who already have received the care they need and delay outreach to families who truly need assistance. Specifically, the pediatric audiologist can reduce loss to documentation by:
- Learning state EHDI-IS functionalities: Each state has a different way of capturing EHDI data, and regulations for reporting and sharing vary by state. Data entry may require log-in to a website, electronic transmission of a results file, or faxing a form. The authors have experience in several states using the OZ eScreener Plus system that uses electronic web-based data entry. Regardless of the data entry method/system, the pediatric audiologist can reduce loss to documentation by learning how the state prefers data to be entered and which data elements are required. Familiarity with the EHDI-IS makes it easier for the audiologist to submit data during busy clinic days, and assures all necessary data elements are communicated to public health in accordance with state regulations and laws. The EHDI coordinator and/or the EHDI-IS vendor are resources for training and information on data entry for audiologists in the EHDI-IS.
- Report accurate and timely data: The best way to reduce loss to documentation is to report results from diagnostics performed for all children under 3 years of age as soon as possible. Reporting should be a routine part of documentation for pediatric audiologists. While the data elements required may vary by state, the table below defines some of the key information that pediatric audiologists can share in an EHDI-IS.
The EHDI-IS as a Clinical Tool for the Pediatric Audiologist
The EHDI-IS is more than a one way transfer of information for the pediatric audiologist. In addition to reporting data in the EHDI-IS, the data management system can be a clinical tool for pediatric audiologists at three points in care: before an appointment, during an appointment, and after an appointment.
Before the Appointment
A complete diagnostic battery includes a thorough case history. Access to an infant’s newborn hearing screening record can inform the audiologist about the infant’s screening history, birth history, and key demographic information prior to the visit. This information is indispensable to schedule the correct appointment type and not lose valuable time in the EHDI process.
Before the appointment, the audiologist can:
- Review the type of screening technology that was used (OAE or AABR)
- Assess the number of screenings received
- Review the pattern of pass/refer responses by ear
- Confirm the medical home provider (e.g. pediatrician)
- View referral information
- The EHDI system may reveal if the family has already been referred for Early Intervention or if needed, link the audiologists to the correct agency for referral
- Obtain risk factors
- Careful review of an infant’s record prior to their appointment 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? This is information the audiologist will confirm with the family during the appointment and may have significant implications for follow up recommendations regardless of findings on diagnostic assessment.
- Review case notes that often 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 their appointment helps communicate respect for the family and the time they have taken to attend a diagnostic appointment. An important consideration noted here may be their preferred language, information which may not have been clearly marked on the physician referral form but which can have huge implications for the success of the diagnostic appointment.
- interactions among the original screening team and the family
During the Appointment
There is a lot that takes place during an infant ABR appointment, even when it is under natural sleep. Parents can be nervous and to be honest, even as an experienced pediatric audiologist we can sometimes still be nervous. We want things to go well! We all hope the infant falls asleep! Please let the electrodes stay in place and that the infant is not too sweaty or covered in lotion! Between the ABR itself, collecting OAEs, and performing high frequency tympanometry it can be easy to get wrapped up in the hustle to complete as much as possible during the appointment. There is a time component driven by the infant’s sleep state and scheduling constraints.
However, it is important to take time at the beginning of the appointment if possible to clarify information from the EHDI system with the family and collect details that may need to be added:
- A pediatrician may have changed
- The family may have been seen in the intervening period by another ENT 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.
- Errors are rare in the EHDI systems we have experience with, but if an inaccuracy is present in the original record this is the time to amend it.
There are times when careful use of the EHDI system can prevent duplication of services and let families avoid unnecessary exposure to sedation. Many infants who enter the foster care system may not carry their original birth records with them and may be sent on for 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 “pass”, we are able to document that status for his or her new care team and avoid unnecessary testing. This takes only a few minutes to do when an audiologist is familiar with the EHDI system. This reiterates our commitment to the right level of care at the right time.
After the Appointment
Following a diagnostic or hearing aid appointment for a child under the age of three, a pediatric audiologist should enter the results into the EHDI system:
- ABR or behavioral thresholds including bone conduction when available
- OAE findings
- Tympanometry results including probe frequency
- Provide a brief overview of the findings including otoscopy
- List the recommendations and any testing notes that might be important, for example was the ABR in conjunction with 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
Immediately after writing the child’s report is the best time to enter the information into the EHDI system while the information is fresh in your mind, why wait? Entering a single assessment takes as little as a few minutes.
For an infant with normal hearing, entering data into the EHDI system is as simple as entering results and checking the record is up to date. When hearing loss is detected in a newborn, the record becomes even more useful. It allows us to:
- Add other providers that the family will see such as their ENT and fitting audiologist. This ensures we all are operating with the same information regarding this child’s hearing status and proceeding without delay or unnecessary duplication of services.
- Make a referral for early intervention directly from the EHDI system, or if the family prefers make that referral by fax.
- Stay up to date on the children on our case load as “case notes” are updated by their care team which allows for tracking progress meeting EHDI benchmarks.
Even though a pediatric audiologist may know how to use the EHDI-IS, and have the best of intentions for entering data, it can feel overwhelming on busy clinic days to have an additional documentation requirement. Dr. Sapp has been a pediatric audiologist in more than one state, and has real-world tips for juggling EHDI-IS entry in a busy clinical practice.
Tip 1: Approach data entry as part of routine care
Dr. Sapp recalls “From my earliest clinical experiences, entering data into the EHDI system was not seen as “extra” work or nice-to-do but as a requirement for pediatric clinical work. Building it into the routine as I developed my own clinical style and found my voice in pediatric audiology prevented it from falling by the wayside as my position became more challenging. When practicing in Texas my patient caseload consisted entirely of babies and toddlers so, I logged in several times per day. I was updating results, confirming screening history, finding pediatricians, and checking for new updates entered by other clinicians or by state EHDI program staff. It became a useful tool to log my own case notes, for keeping track when babies didn’t fall asleep during non-sedated ABRs and were scheduled to return for a repeat exam. As a training site for audiology doctoral students, I talked through my process and reminded trainees when they overlooked the EHDI systems’ role in the care we delivered.
Every state’s EHDI program looks a little different. It’s a product of the geography, the people who live there and the minutiae of a state’s newborn hearing screening legislation. This diversity can be a strength. There are lots of ways to ensure that the needs of Deaf/Hard of Hearing babies and their families are met. When I was not able to find a baby in Texas, I contacted OZ Systems directly for assistance. The state of Texas has about 400,000 births per year and the EHDI coordinator is tasked with building and maintaining a program that can accommodate them all. In Iowa, when I can’t find a baby, I reach out to the state EHDI coordinator or her team. Iowa’s birth rate is closer to 40,000. Considering the incidence of congenital hearing loss, it’s possible for the state EHDI team to track each case on a more granular level and as such they are the best resource for helping navigate the OZ eScreener Plus child records. However, in both states I have felt supported and able to effectively use the interface to accomplish my goals.”
Tip 2: Report what you can and know the process is always iterating
Dr. Sapp recalls, “Pediatric audiology can mean completing a two-and-a-half-hour appointment to come away with one ABR threshold and a single high frequency tympanogram. Our process of repeating audiological evaluations and refining our diagnostic picture of a baby’s hearing may mean that we later revise our initial recommendations. That is why I report all the assessments I perform, beyond the first ABR or that outpatient re-screen. Every baby is an individual and each appointment can be iterative: gradually trying different approaches to obtain reliable audiological information. Sometimes, the hearing data gathered 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 a hearing loss it is better to have them enrolled in services then to classify them as “not yet determined” because every bit of data has not been collected. A child with a transient conductive hearing loss is still at risk if this issue is ongoing. 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 system must be a call to further action, not a reason to delay care. Once I have obtained sufficient information to reasonably consider a hearing loss is present, I will use my best judgement to update their diagnosis in the EHDI system. Later hearing tests can fill in informational gaps from initial ABR assessment, and by reporting ongoing findings I can be confident that other users are seeing the most up to date profile of a child’s hearing. Using strategies carried over from the birth screening literature such as directly scheduling follow up appointments, collecting alternate contact information, and providing follow up information in written and spoken forms can ensure that “not yet determined” doesn’t translate to “lost to follow up” down the road. If initial results suggest the presence of an educationally and developmentally significant hearing loss, making that referral to early intervention can mean additional support in facilitating family follow through with future appointments”.
“Closing the Loop”
As EHDI programs work to ensure all infants meet the 1-3-6 timelines, the audiologist remains a key player in “closing the loop” by providing best practice audiological care and entering vital information in the state EHDI-IS system. As more providers begin to engage in state EHDI-IS data entry, EHDI programs will be armed with the data necessary to help infants with hearing loss reach their full potential.
What Information Does Public Health Need from the Audiologist?
In order for public health to assist the child, their family and the providers, the following information is needed:
- Infant’s current name
- Caregivers’ current contact information
- Known risk factors
- Primary Care Provider (often this is not determined before discharge from the hospital)
- Child’s hearing status per ear (based on CDC 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 (ANSD), not yet determined
- Degree: Slight, Mild, Moderate, Moderately Severe, Severe, Profound, not yet determined
- Test Battery used for Hearing Confirmation
- ABR, ASSR, OAE, Tympanometry, Reflexes
- No further evaluation required, monitor for late onset, return for further evaluation
- CDC 2016 EHDI data website cited per publisher conventions https://www.cdc.gov/ncbddd/hearingloss/ehdi-data2016.html
- Yoshinaga-Itano, C., Sedey, A. L., Coulter, D. K., & Mehl, A. L. (1998). Language of early-and later-identified children with hearing loss. Pediatrics-English Edition, 102(5), 1161-1171.
- Joint Committee on Infant Hearing. (2007). Year 2007 position statement: Principles and guidelines for early hearing detection and intervention programs. Pediatrics, 120(4), 898-921.
Sapp, C. & Crumley Welsh, W. (2019). The pediatric audiologist in early hearing detection and intervention (EHDI). AudiologyOnline, Article 25248. Retrieved from http://www.audiologyonline.com