In 2001 the American Academy of Pediatrics (AAP) implemented a program, Improving the Effectiveness of Newborn Hearing Screening, Diagnosis, and Intervention through the Medical Home, funded through a cooperative agreement from the Maternal and Child Health Bureau (MCHB)
, Health Resources and Services Administration (HRSA)
, and the Centers for Disease Control and Prevention (CDC) National Center on Birth Defects and Developmental Disabilities (NCBDDD)
respectively, for the planning, ongoing mangement, and implementation of its Early Hearing Detection and Intervention (EHDI) program, focused on increasing the involvement of primary care pediatricians and other child health care providers by linking follow-up services more closely to the newborn's medical home. As part of EHDI and this program, the AAP has worked to identify one pediatrician in each chapter to champion this cause. Since 2001, more than 60 chapter champions have been identified and are actively participating in the program at the national and state/chapter levels.
Loss to Follow-Up
Since 2000, the percentage of newborns screened for hearing loss dramatically increased from 52% to 95%. However, almost half of the children who “do not pass”* hearing screening tests lack a documented diagnosis. The infant’s primary care medical home provider plays an important role in ensuring that timely follow-up and the appropriate documentation of that follow-up occur. Without the active asssitance of the medical home, the infant may be considered “lost” in the EHDI system, which undermines the potenital benefits of newborn hearing screening. A “wait and see” approach is never appropriate. An infant who does not pass his/her newborn hearing screening has a potential developmental emergency!
*Do not pass includes infants who have “failed” or missed the hearing screening or those who had an invalid, uninterpretable result.
View guidelines for rescreening here
What can a newborn identified with possible hearing loss be “lost” to?
Lost to follow-up: For infants who did not pass newborn hearing screening, “lost to follow-up” refers to a failure to receive the next step of treatment, be it rescreening or comprehensive audiologic evaluation.
Lost to documentation: Failure to report the results from hearing screening, rescreening, diagnostic services, and/or treatment services to the state EHDI program and the medical home. These data are needed for comprehensive surveillance and monitoring to ensure infants receive recommended services. Lost to documentation can mean:
- Hospital does not record and/or report results of first screening
- Hospital does not record and/or report results of second screening
- Audiologist does not report results
- Medical home provider does not record and or report the results of the rescreening
Lost to treatment: Failure for a child with an identified hearing loss to receive needed therapeutic services and failure for families to receive needed information to support decisions regarding treatment options.
What is the medical home’s role in reducing the percentage of infants WHO do not pass the newborn hearing screen and who are then considered lost to documented follow-up?
The following information outlines specific actions the medical home can take to reduce the percentage of infants who do not pass a newborn hearing screening who either do not receive follow-up care or for whom follow-up is not reported back to the state EHDI programs. It is important to note that the actions outlined below are specific to reducing lost to documented follow-up.
Additional considerations for the medical home, click here
A supplement to the August 2010 issue of Pediatrics features a series of articles highlighting the challenges that remain to be addressed to ensure early diagnosis and intervention for all children with early hearing loss. In a forward to the supplement, Former Surgeon General C. Everett Koop reflects on how far we have come in implementing the screening program, and expresses optimism that remaining problems can be solved through collaborative efforts, data-driven quality improvement activities, and creative uses of new technology.
State EHDI programs
promote universal newborn hearing screening, develop effective tracking and follow-up as a part of the public health system, promote appropriate and timely diagnosis of hearing loss, prompt enrollment in appropriate Early Intervention, ensure a medical home for all newborns and strive to eliminate geographic and financial barriers to service access. Early Intervention (Part C of IDEA) is a federal grant program that assists states in operating a comprehensive statewide program of early intervention services for infants and toddlers with disabilities, ages birth through age 2 years, and their families.
AAP EHDI Program Strategic Plan
The AAP Task Force on Improving the Effectiveness of Newborn Hearing Screening, Diagnosis and Intervention serves as the oversight group for the AAP EHDI program. In 2010 members of the Task Force developed a Strategic Plan
in an effort to outline the areas of greatest priority and related objectives. Strategic planning helps determine where an entity/program wants to be at some point in the future and how it is going to get there. The process of strategic planning involves thinking beyond the current, establishing goals for the next (typically) 3-5 years, and identifying how those goals will be achieved through various objectives that can be broken down into specific actionable activities/operational plan. The plan also influences what products are developed, how resources including time are allocated, and what the roles and responsibilities will be. The strategic plan is not a stagnant or permanent document and the planning process is never ‘done’. The plan, and therefore the document, may/can change with time based on new information, innovative ideas, change in leadership, etc.
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Joint Committee on Infant Hearing (JCIH)
is a multidisciplinary group of representatives from six organizations: the AAP, the American Speech-Hearing-Language Association, the American Academy of Audiology, the American Academy of Otolaryngology-Head and Neck Surgery, the Directors of Speech and Hearing Programs in State Health and Welfare Agencies, and the Council on Education for the Deaf. The AAP has two official representatives on JCIH. The primary purpose of JCIH has been/is the publication of position statements summarizing the state of science and art from infant hearing, and recommending the preferred practice in the early identification and appropriate intervention of newborns and infants at risk for or with hearing loss.
Task Force on Improving the Effectiveness of Newborn Hearing Screening, Diagnosis and Intervention
The AAP Task Force on Newborn and Infant Hearing has developed educational materials for both professional and public audiences.
- Universal Newborn Hearing Screening Public Education Brochure
- Universal Newborn Hearing Screening, Diagnosis, and Intervention-Guidelines for Pediatric Medical Home Providers:
- Guidelines Page 1
- Guidelines Page 2
- The easy-to-follow flowchart can serve as guidelines for pediatric primary care providers and others involved in the medical care of infants and young children and their hearing health. This resource provides a step-by-step guide on hearing screening, diagnosis and management from birth through 6 months of age and beyond. The resource also provides detailed information about ongoing hearing, speech and language related care for all infants, as well as a template for use by physicians' offices to easily customize patient referral information. A listing of national resources on early hearing detection and intervention is also included.
These guidelines are a handy practice resource that can be printed, reproduced, and kept in office examining rooms for convenient reference. They were developed in collaboration with the National Center on Hearing Assessment and Management (NCHAM) with funding from an educational grant from the MCHB/HRSA/HHS.
- Universal Newborn Hearing Screening, Diagnosis, and Intervention Patient Checklist for Pediatric Medical Home Providers
This AAP resource allows health care professionals to track hospital-based inpatient hearing screening results, outpatient hearing screening results, information from the pediatric audiologic evaluation, ongoing audiologic services, enrollment in early intervention services, and medical evaluation results in one place in their patient’s chart. The checklist also includes an easy-to-use guide to ensure that the child is linked with appropriate services, ensures that the necessary evaluations are coordinated, as well as provides space for you to record relevant service provider contact information.
Resources and Tools
- Video: AAP Tools for Medical Home Providers to Address Loss to Follow-up/Documentation (LTF/D) To support the efforts of medical home providers, a subcommittee of the national AAP EHDI Task Force, the EHDI LTF/D Workgroup, has developed five tools/resources for medical home providers to improve care around early hearing detection and intervention, including reducing loss to follow-up/documentation. These include a glossary of EHDI terms; newborn hearing screening checklist; office rescreening guidelines; algorithm for clinical decision support; and a set of considerations for medical homes to employ best practices regarding newborn hearing screening. This webinar was recorded on January 17, 2014 and organized to introduce the tools, walk through how to use them in practice, and encourage incorporating them into practices and electronic health record systems.
- Video: Improving Follow-up for Infant Hearing Screenings A new video from the National Initiative for Children’s Healthcare Quality (NICHQ), highlights how families, health practitioners, and quality improvement experts are working together in the Improving Hearing Screening & Intervention Systems (IHSIS) project in order to ensure that all babies receive appropriate follow-up after failing their newborn hearing test. This coordination of care is an essential component of the medical home model of care.
- American College of Medical Genetics (ACMG) Statement: Genetics Evaluation Guidelines for the Etiologic Diagnosis of Congenital Hearing Loss The advent of hearing screening in newborns in many states has led to an increase in the use of genetic testing and related genetic services in the follow-up of infants with hearing loss. A significant proportion of those with congenital hearing loss have genetic etiologies underlying their hearing loss. To ensure that those identified with congenital hearing loss receive the genetic services appropriate to their conditions, the MCHB/HRSA funded the ACMG to convene an expert panel to develop guidelines for the genetic evaluation of congenital hearing loss. This resource provides a brief overview of the current knowledge of hearing loss, newborn screening, and newborn hearing screening, an overview of genetic services and a guideline that describes how best to ensure that patients receive appropriate genetic services.
This Web site on hearing loss in children contains specific pages for families, health care providers, EHDI programs, and national partners. The site contains statistical data on hearing loss, and information on prevention, signs and symptoms, screening and diagnosis, and treatment of hearing loss.
- Pediatric Resource Guide to Infant and Childhood Hearing Loss
Center for Early Intervention on Deafness (CEID)
The 2nd edition of the CEID Pediatric Resource Guide to Infant and Childhood Hearing Loss is a comprehensive resource for pediatric providers working in all settings who need quick and accurate information regarding newborn hearing screening laws, screening and diagnostic evaluations, referrals procedures, timelines, and amplification and cochlear options, Early Start and educational services, recent findings on genetic syndromes and environmental etiologies and special considerations for the child who has a unilateral or mild hearing loss. Visit CEID Web site to remain current on issues related to hearing loss in infants and young children.
- Just in Time Early Hearing Detection and Intervention Educational Kit
This FREE educational kit is a handy practice resource that helps provide hearing health care for the infant and children. Just in Time materials can assist practices in meeting the goals of EHDI. For more information, or a hard copy of the Just in Time materials, email the CDC or visit the CDC Web site.
- Video Scrapbook from National Center for Hearing Assessment and Management
NCHAM took the opportunity during the 2003 EHDI Conference to interview and videotape a number of dedicated parents and professionals sharing a variety of perspectives on the status of EHDI efforts and the ongoing challenges and opportunities we face. NCHAM has distilled these interviews into a series of short clips of powerful statements on the importance of EHDI.
- Newborn Hearing Screening Video: Giving Your Baby a Sound Beginning
National Center for Hearing Assessment and Management
This six-minute video was developed in collaboration with the AAP and introduces parents to the importance of having their newborns screened for hearing loss. This video is ideal for educating parents in prenatal classes, birthing hospitals, and other health care and educational settings. Available in English and Spanish.
- EHDI PowerPoint Presentations (Sample Presentation)
These video clips provide you with a "library" of viewpoints and statements that can be used for national, state, and local EHDI presentations and can be downloaded and reformated to meet your needs.
- It's Natural to Want to Know about Your Baby's Hearing
National Center for Hearing Assessment and Management
This video promotes family awareness of their newborn's hearing screening result.
- Denial Management and Contract Negotiation for Hearing Screening Services This resource provides strategies and a template letter for pediatric practices to handle payer denials and contractual issues. In addition, it provides diagnosis and procedure codes, including Healthcare Common Procedural Coding System (HCPCS) Level II Procedure and Supply Codes with vignettes of common scenarios encountered by primary care providers related to hearing.
- Hearing Screening Coding Fact Sheet for Primary Care Providers
American Academy of Pediatrics
While coding for hearing screening is relatively straightforward, ensuring that appropriate payment is received for such services is a more complicated matter. This coding fact sheet provides a guide to coding for pediatric hearing screening. While the fact sheet provides suggested codes, it should be noted that payer recognition of codes may vary.