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NIDCD Working Group: Better Communication Needed to Reduce Infants ‘Lost to Follow-Up’

Every eight or so seconds, a baby is born in the United States. And at each deliriously joyous debut, first-time parents -- not to mention the second-, third-, and fourth-time ones -- have been known to silently gape in awe at the squirmy, squalling, red-faced wonder they hold in their tentative hands. Wow. A baby.

And then: Whoa. A baby. What do we do now?

True, it's amazing how much one person half the size of last year's Thanksgiving turkey can add to a to-do list. There are strollers, carriers, and diapers by the carload to buy. Lotions, powders, ointments, and oils. Monitors and mobiles; rattles and teething rings. But if parents knew of one simple thing they could do now, on top of everything else, that would help their child's social, emotional, and cognitive growth, would they do it?

Chances are they would, says a recent working group of the National Institute on Deafness and Other Communication Disorders (NIDCD). The group, which met in August 2001, brainstormed new strategies that could help improve outcomes for deaf or hard-of-hearing children who are initially identified as having a possible hearing loss through a newborn hearing screening test. The panel, the fourth in a series of scientific working groups on hearing screening and intervention, was the first to target communication as a key element for successful early identification of hearing loss. The term "intervention" refers to all of the steps that families can take -- social, technological, or a blending of the two -- to overcome the communication barriers caused by a hearing loss.

Specifically, the group considered how communication -- between hospital and doctor, doctor and doctor, doctor and parent, hospital and parent, and so on -- could help increase the number of children who, after not passing their initial hearing screening, receive diagnostic hearing examinations by the time they are three months of age. Screening is a first snapshot into the hearing ability of a newborn; diagnosis involves a full testing and assessment as well as a strategy for intervention. In the vernacular of the hearing health professional, diagnosis plus intervention equals "follow-up."

Twelve individuals representing hospitals, medical schools, public health agencies, and professional organizations, and expert in the areas of pediatrics, otolaryngology, audiology, speech and language, ethics, newborn screening, health communication and education, nursing, special populations, telemedicine, and epidemiology participated on the panel.

To be sure, identifying hearing loss in infants has improved markedly since a decade ago. In 1993, only infants who were at high risk for hearing loss, such as babies of low birth weight or those born with an infection known to cause hearing loss, were screened. Consequently, only 30 to 50 percent of children born with a hearing loss were identified. Moreover, the diagnosis typically occurred when the child was two-and-a-half to three years of age or older -- long after the critical period during which children acquire a native language and begin sharpening their language skills. Now, thanks to mandatory and voluntary screening programs in 42 states and the District of Columbia, an estimated 69 percent of infants are screened for hearing loss, usually before they leave the hospital.

But screening is only half the battle, says Dr. Amy Donahue, chief of the Hearing and Balance/Vestibular Sciences Branch in NIDCD's Division of Extramural Activities, who, along with Dr. Marin Allen, chief of the Office of Health Communication and Public Liaison, co-chaired the meeting. (The Division of Extramural Activities is the arm of NIDCD that funds biomedical research conducted at universities, hospitals, and other research institutions.) If a child does not pass the screening, he or she is referred to an audiologist, a healthcare professional who performs a complete hearing evaluation and directs parents to the necessary resources that can assist them. In 2000, only 56 percent of children who were referred to an audiologist for follow-up received the necessary diagnostic evaluation, according to the Centers for Disease Control and Prevention (CDC).

"Children with hearing loss who don't receive a follow-up examination are likely to have a difficult time trying to keep up with their classmates in school -- whether their classmates are hearing or hard-of-hearing," said Donahue. "When parents don't make or keep the follow-up appointment, not only are they unaware of the extent of their child's hearing problem, but they are completely out of the loop when it comes to accessing the full range of services that could put their child on sure footing for success."

"But the problem does not begin and end with the parent," added Allen. "Often the parent is not given the necessary information. Or medical professionals and intervention " she said. "Communication plays a key role in making any intervention program successful and improving outcomes for the children who are identified with deafness or hearing loss."

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Why follow-up?

Speech, hearing, and language professionals have long understood the importance of hearing in the development of a child's language skills, which takes place with great gusto during the first six months of life. And it's these language skills that are integral to so many other areas of a person's development, such as the ability to interact with other people, and to read, think, and learn.

Method of communication that combines the mouth movements of speech with visual cues to help deaf or hard-of-hearing individuals differentiate words that look similar on the lips, as in bunch vs. punch, or are hidden from view, as in the word gag. However, if hearing loss is discovered early, deaf and hard-of-hearing infants can learn to communicate in other equally effective ways. These include taking advantage of any residual hearing by using a combination of oral and auditory skills, together with assistive or augmentative devices, such as hearing aids, cochlear implants, FM transmitters, and other technologies. It may also include learning American Sign Language (ASL), or using techniques such as speechreading (also known as lip-reading); cued speech, a form of signing that combines speechreading with hand gestures that represent phonetic sounds; or a combination of oral and manual measures that make use of different communication skills.

In a study published in the Sept. 2000 issue of Pediatrics, researchers found that children with mild to profound hearing loss who started comprehensive intervention programs before 11 months of age demonstrated significantly better vocabulary and verbal reasoning skills at five years than children who started later. Moreover, they found that early starters scored roughly as high as their hearing peers, regardless of the degree of their hearing loss.

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Roadblocks to follow-up

So what prevents some parents from taking their child to a follow-up exam after the hearing screening reveals a possible problem? According to the working group, a child could fall through the cracks -- what's commonly referred to as being "lost to follow-up" -- for a number of reasons. The group's final report, Communicating the Need for Follow-up to Improve Outcomes of Newborn Hearing Screening, summarizes some of the barriers that currently exist, and describes how better communication strategies can help overcome some of these barriers.

Some babies are not screened

The "communicating follow-up" panel acknowledged that, despite the inroads that have been made in hearing screening, some babies are still not screened at all. For example, some states screen only those newborns who are born in hospitals. They do not screen children born in homes and alternative birthing centers. According to the CDC, alternative birthing centers account for approximately one percent of births in this country.

Transportation barriers

Transportation, too, can present a problem, said the panel. Families who rely on public transportation could take an hour and a half in commuting time to arrive at a doctor appointment, while those in rural areas may not have access to transportation of any kind.

Funding barriers

Another problem is the lack of funding for many hospitals. When budgets are tight, hospital staff have enough difficulty caring for the patients who check in for treatment, much less the ones who should, but don't. Many hospitals are not equipped to track every infant who needs to be scheduled for a follow-up examination and make sure that it happens.

Staffing barriers

Staffing is also a problem. A nationwide decline in physicians, and, in turn, large caseloads and frequent rotations among doctors, creates an environment in which parents receive information that is spotty and incomplete. The same is true for other hospital staff. High turnover and the constant jostling of schedules allow ample opportunity for an important health message to be lost in the shuffle.

'Lost messages' and the role of communication in effective intervention

It's these lost messages that are at the heart of a large number of no-shows, said the panel. If an infant is transferred to a neonatal intensive care unit in another facility, for example, caregivers may not see parents for several days. This increases the chance that follow-up information won't be relayed. Likewise, parents may have difficulty providing the kind of information a hospital requires to track a child's progress, such as a name and address of a physician who could perform the follow-up evaluation. Not everyone has a family physician.

Language and literacy barriers

Language barriers also exist, as do literacy barriers. In the United States, 329 languages are spoken or signed, and nearly 18 percent of the population -- more than 40 percent in some cities -- speaks a language other than English as a first language. According to the most recent National Assessment for Adult Literacy, 21 to 23 percent of American adults function at the bottommost literacy level. They may be able to locate their child's name on a birth certificate, fill out a job application, or find a street on a map, but they cannot answer fairly straightforward questions about a newspaper article they've just read. Another 25 to 28 percent function at the next level, which means they can read a paycheck or find an answer to a health question in a fact sheet or brochure, but they would have difficulty interpreting a complex bus schedule.

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Proactive Steps

What can be done? The panel suggested a few possible strategies for each of the groups most closely involved in the follow-up process. They include:

Healthcare professionals and a 'medical home'

Healthcare professionals need to feel responsible for a child's follow-up examination after the screening, the panel said. One way for them to do this is to link the child to a "medical home" as soon as the child is born. A medical home isn't an antiseptic-smelling building with mauve-painted walls. According to the American Academy of Pediatrics, a medical home describes a process by which a child receives healthcare services that are:

  • accessible,
  • family-centered,
  • continuous,
  • comprehensive,
  • coordinated,
  • compassionate, and
  • culturally competent.

Ideally, that means the care should, among other things,(1) be located in the child's community, (2) accept all forms of insurance, (3) link the child to other health resources in the community, and (4) provide access to the same pediatrician from infancy through adolescence.

Another possibility is for healthcare workers to base hearing screening procedures on screening systems that have been working well for years, such as for phenylketonuria (PKU), a metabolic disorder that can lead to epilepsy and mental retardation. And health information systems need to be better integrated so that all healthcare workers who treat a particular child can access the child's records quickly and efficiently.

Health communication professionals and the 'continuum of care'

Health communication professionals should think of follow-up as part of a child's "continuum or care" -- not a new and separate healthcare initiative -- and should phrase messages to physicians and professional associations in that way, said the panel. In addition, they should team with nursing and teachers' organizations to help update educational curricula that will facilitate training in newborn screening and follow-up procedures. When communicating with parents, communicators should stress the importance of identifying a hearing loss early so that the child's language skills are not limited. They also should explain that hearing screening is easy and painless for the child and that the child should be checked regularly for hearing loss, even if he or she passes the screening. Communicators need to write for their audience, taking into consideration culture, race, and socioeconomic background, said they panel. They also should broaden their outreach, using nontraditional methods such as closed-circuit television spots, childbirth education classes, grandparents groups, and state Women, Infants, and Children (WIC) programs to get the message across.

Parents taking an active role

Parents shouldn't wait for information to come to them, the panel said, but should take an active role in the health of their child. This means working with healthcare staff at the hospital to schedule the follow-up appointment once their child has been identified as having a possible hearing loss. They also should ask for more information about hearing loss, and look into state resources that are available to families of children who are deaf or hard-of-hearing. And parents should be responsible for their child's healthcare on a continuous basis, making sure to keep doctor's appointments and notify doctors and specialists of any address or phone number changes.

Scientists and the research responsibility

Scientists and engineers can help in the effort by developing technologies that can make hearing screenings and follow-up more accessible. For example, researchers should develop new mobile testing devices and other technologies that provide follow-up and intervention services to families in rural settings. Also, scientists need to improve screening technology to reduce the number of "false positives" -- results that indicate that there may be a hearing problem when in fact there isn't one. When the number of false positives is high for a particular test, the panel said, parents may question and sometimes disregard the results.

Physicians, professional associations, and hospitals must communicate clearly

Physicians must communicate screening results accurately and carefully to parents, making sure that they understand what the results mean, and why the follow-up examination is important. Likewise, hospitals should develop a standard protocol for interpreting screening results and communicating these results to parents, so that no parent leaves the hospital without having a clear understanding of what the results mean and what the parent needs to do next. Physicians also need to become knowledgeable about state and local programs pertaining to early identification of hearing loss, as well as other resources that are available, so they can help provide guidance when families are in need of answers. The panel suggested that, in regions where resources are lacking, hospitals might consider cross-training staff to perform screening and follow-up testing. When adequate supervision is provided, technicians, paramedics and emergency medical personnel, volunteers, nurses (as well as nurse aides and assistants), lab technicians, and respiratory therapists can be trained to perform some of these tasks on an as-needed basis.

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Where to begin?

Improving follow-up doesn't have to begin at square one, the panel said. Many community programs in this country are overcoming similar challenges with great success, and can be looked upon as models. For example, one program that tracks indigent, homeless drug users is experiencing a follow-up rate of 97 percent. A Latino and Latina health center has changed its screening procedures to target the high number of transients in its community. And the state of Massachusetts is yielding an 80 percent follow-up rate, thanks to the use of electronic birth certificates, a tracking system maintained by the state health department.

"The good news is that some of the panel's suggestions can be implemented simply -- starting now -- at virtually no cost," said Allen. "Others are more complicated, requiring a change in policy, additional training, or an upgrade in technology."

"But if the hearing health profession can do for follow-up what it did for hearing screening -- and thanks to the coordinated efforts of many, it has moved mountains -- I feel certain we can take early identification to the next level."

Read the full report online at www.nidcd.nih.gov/StaticResources/funding/programs/hb/hearingreport.pdf.

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