Hearing screenings, like APGAR scores and blood spot tests, have become a rite of passage for newborns, a real benefit for children with hearing loss because studies link early intervention with better speech and language outcomes. The problem, however, is that some children do not receive timely follow-up, delaying diagnosis and treatment.
The majority of newborns and infants in the United States — 97.9 percent — were screened for hearing loss in 2010, according to new data from the Centers for Disease Control and Prevention, largely because the Newborn and Infant Hearing Screening and Intervention Act of 1999 provided federal grants to fund Early Hearing Detection and Intervention (EHDI) programs. Forty-five states now have their own EHDI laws while others voluntarily operate early hearing screening programs. (See FastLinks.)
The Joint Committee on Infant Hearing recommends screening all newborns before 1 month of age, performing a diagnostic evaluation on those who fail screening before 3 months, and initiating intervention services for infants with permanent hearing loss before 6 months. (See FastLinks.) CDC data show, however, that 39.4 percent of the 58,202 infants who failed their initial hearing screening in 2010 never received follow-up diagnostic services or the care they received was not documented. That figure actually represents an improvement over past years, when the rate was 45.1 percent in 2009 and 64 percent in 2005.
The CDC also reported that 24.2 percent of babies with hearing loss in 2010 lacked any record of receiving early intervention services. That percentage is little changed from the prior year. “There are a significant number of kids who are appropriately followed up, but their follow-up isn't documented, and there are likely still some children falling through the cracks who need services and aren't getting them and aren't diagnosed at an appropriate age,” said Charles J. Homer, MD, the cofounder, CEO, and president of the National Initiative for Children's Healthcare Quality.
“Out of every 10 children who fail their newborn hearing screening, one of those is definitely diagnosed with hearing loss, four of those are definitely diagnosed as not having hearing loss, and the other five we don't have a clear sense; we don't have clear documentation,” he said. The situation has spurred a flurry of activity aimed at identifying the many barriers to care that exist and implementing changes to plug gaps in state systems of care.
Where are the Gaps?
The move from inpatient hospital screening to outpatient diagnosis may be responsible for some infants getting lost in the system, said Anne Marie Tharpe, PhD, a professor and the chair of hearing and speech sciences at Vanderbilt University in Nashville. “The infrastructure needs to be in place for having babies routed efficiently and effectively from the screening to the diagnostic site,” she said.
Hospitals, in most states, are required to report the results of newborn hearing screenings to their EHDI programs. Follow-up can be tricky when an infant is discharged from the hospital, however. Last names, phone numbers, and addresses change, and parents may forget an audiologist appointment or may not appreciate the urgent need for a diagnosis. Some cannot afford a trip to the audiologist or do not have access to transportation. Non-English speakers may not comprehend discharge orders.
Most states require hospitals to report screening results to their respective state health departments. Many, if not most, states do not require audiologists to report diagnostic test results. The information gap makes it difficult to confirm whether a child was diagnosed and if the diagnosis indicated hearing loss.
Convincing audiologists of the importance of reporting has been a challenge in some states,” said Anne Oyler, AuD, the associate director of audiology professional practices at the American Speech-Language-Hearing Association. Dr. Homer agreed, noting that he thinks hearing healthcare providers are aware they need to improve. “[T]hey're not always aware of how critical their role is in both facilitating the testing and documenting and communicating the results,” he said. Many states also suffer from a shortage of pediatric audiologists who know how to perform the appropriate testing.
Improving Systems of Care
President Obama signed legislation in December 2010 reauthorizing and expanding the EHDI law. The new law emphasizes that babies referred from screening programs must be promptly diagnosed by qualified health professionals and that children with hearing loss must receive appropriate information and services. The measure also focused on the need for efficient models of care.
The National Initiative for Children's Healthcare Quality, a Boston-based nonprofit organization, is helping states apply quality improvement methods to boost rates of documented follow-up and intervention. (See FastLinks.) Many states, for example, have developed scripts for nurses and hospital staff to use when speaking to parents about the importance of scheduling an audiologic exam. A number of states are using fax-back forms to notify primary care doctors of newborn screening results and requesting definitive information on follow-up results. NICHQ also encourages frequent review of loss-to-follow-up and loss-to-documentation data. The data can help states drill down into problem areas and implement fixes expeditiously, Dr. Homer explained.
Part of the problem in several states has been access to qualified pediatric audiology services, ASHA's Dr. Oyler said. A national stakeholder group whose members include audiology experts from the states and federal governments, professional organizations, and private outfits is producing an online directory of pediatric audiology services to help families locate audiology facilities that serve kids. The web-based directory, going live in November, is carefully vetted to include only those facilities equipped to follow best practice standards for infants and children up to age 5, she said.
A Lack of Pediatric Audiologists
The Health Resources and Services Administration's Maternal and Child Health Bureau, the largest funder of EHDI programs and related services, is targeting the pediatric audiologist shortage. (See FastLinks.) The bureau in 2009 began providing supplemental funding to 10 university-based graduate training sites for expanded pediatric training. The Leadership Education in Neurodevelopmental and Other Related Disabilities programs, more commonly known as LEND, produced 36 fully matriculated trainees, 35 medium-term trainees, and 89 who were exposed to the pediatric audiology curriculum from July 2011 through January 2012. Students also learn to use teleaudiology in some of the programs.
“There simply are not enough pediatric audiologists, and there are not enough in rural areas,” said Irene Forsman, RN, the director of the bureau's universal newborn hearing screening and intervention program. Using teleaudiology will save families time and money spent on traveling to see a pediatric audiologist, she said.
Currently, the National Center for Hearing Assessment and Management at Utah State University in Logan is hosting a “learning community” to assist the seven states implementing teleaudiology systems. (See FastLinks.) “They've got equipment, they've got a plan, they've got dedicated people, and some may be more experienced than others,” said Karen Muñoz, EdD, an assistant professor at Utah State and NCHAM's associate director. Participating states will share information and learn from one another over a six-month period, she said.
Pediatrix Medical Group, Inc., in Sunrise, FL, provides newborn hearing screening in more than 300 hospitals nationwide, and is taking steps during the hospital stay to enhance parent education. One such strategy is bedside screening. “We want the mom to witness the screen because if you screen a baby in the newborn nursery and you give them a piece of paper, it's like a mystery happened and they're not really sure what it meant,” said Gail Lim, AuD, the vice president of program development for the newborn hearing screen program.
Another strategy that has worked is having parents of deaf or hearing-impaired children contact parents of newly identified infants and children with hearing loss to provide support and guidance. The nonprofit advocacy group Hands & Voices operates one such program called Guide-By-Your-Side. It pairs trained mentors with families to navigate the follow-up process and provide emotional support. (See FastLinks.)
Follow-up rates in North Dakota have increased sharply in recent years, from 47 percent in 2006 to 81 percent in 2011. Wendy Thomas, North Dakota's EHDI program director, and Sue Burns, RN, the program administrator of children's special health services for the state department of health, credit numerous factors. The state, for example, expanded its cadre of follow-up coordinators from two to three and restructured their responsibilities. Each tracks infants at assigned hospitals from birth through the outpatient setting instead of dividing responsibilities for inpatient and outpatient care.
North Dakota also began convening annual visits at hospitals with maternity wards where local audiologists, pediatricians, hearing screeners, early intervention staff, and others with a hearing healthcare interest meet face to face. It is “very beneficial,” Ms. Thomas said, “because then the birth screen providers have a better understanding that their level of documentation into our statewide database really does have an impact on an audiologist who may need to see that child next, and then the audiologists realize that they need to also have very good documentation of that child's status because an early intervention provider might also be needing to support that family after a diagnosis.”
Massachusetts boasts one the lowest loss-to-follow-up rates, and Jana Ziegberman, AuD, a pediatric audiologist and newborn hearing screening coordinator at Boston Medical Center, works closely with the state department of public health to ensure that every child is tracked. The hospital performs initial and follow-up screenings when needed and conducts diagnostic evaluations. “If I have a problem getting a parent to come back, I can contact DPH. If a child is diagnosed with hearing loss, I definitely depend on DPH to help me talk to the parents and make sure that they're getting everything that they need,” she said.
- Learn more from the CDC about identifying babies with hearing loss at http://bit.ly/CDC2010data.
- Read about the Newborn and Infant Hearing Screening and Intervention Act of 1999 at http://bit.ly/InfantAct1999.
- A summary of the early hearing detection and intervention program position statement from the Joint Committee on Infant Hearing is available at http://bit.ly/JCIHfacts.
- Check out NICHQ's website at http://www.nichq.org/.
- Visit the Health Resources and Services Administration's Maternal and Child Health Bureau at http://www.mchb.hrsa.gov/.
- Learn more about NCHAM at http://www.infanthearing.org/
- Read about the nonprofit group Hands & Voices at http://www.handsandvoices.org.
- Visit HJ's Student Blog at http://bit.ly/HJStudentBlog.
- Check out HJ's R&D Blog at http://bit.ly/RDBlog.
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