Newborn Screening Detects Problems
Public Health Feature – February 2011
Tex Med. 2011;107(2):47-51.
By Crystal Conde
Alice Gong, MD, a San Antonio neonatal-perinatal medicine specialist, knows how important it is to ensure infants with hearing loss or impairment receive screening, diagnosis, and intervention by age 6 months.
"Before Texas law required hearing screening in newborns, the earliest age children were diagnosed was 18 months," Dr. Gong said. "When children with hearing loss or impairment receive a late diagnosis, they can experience difficulty learning to read for years, can have trouble with diction, and can experience other health and social problems."
In the past, the vast majority of children diagnosed with hearing impairment or hearing loss didn't receive a hearing screening until they were between ages 2 and 4 years. Late diagnosis substantially jeopardized their ability to successfully acquire many social and communication skills. Even though congenital hearing loss is almost three times more prevalent than other disorders combined, Texas did not routinely screen babies for it.
In the 1999 legislative session, the Texas Medical Association supported House Bill 714 by Rep. Elliott Naishtat (D-Austin). The bill addressed the lack of routine screening for congenital hearing loss by implementing a newborn hearing screening, tracking, and intervention program within the Texas Department of State Health Services (DSHS), known as the Texas Early Hearing Detection and Intervention (TEHDI) program. (See "TEHDI Program Details.")
Dr. Gong, a member of TMA's Committee on Maternal and Perinatal Health, says that children have a much greater chance to thrive when they receive medical intervention for hearing loss and impairment by age 6 months. Early diagnosis and intervention improve infants' hearing and ability to learn words and to interact. Early intervention gives them access to hearing aids and other devices and services that help enhance their development.
Texas law specifies a physician or health care professional should direct and coordinate appropriate and necessary follow-up care for children identified with hearing impairment or loss. Dr. Gong encourages physicians to use the TEHDI Provider Access Tool to determine whether newborns passed their initial hearing screen and to ensure they receive appropriate follow-up care.
The Provider Access Tool is a free online resource Texas primary care physicians can log on to through the TEHDI system with a user name and password.
The tool helps physicians quickly review an infant's hearing screen to determine if further intervention is needed.
To request a user name and password, contact TEHDI Coordinator Mary Gwyn Allen at (800) 252-8023, ext. 7726, or e-mail MaryGwyn.Allen[at]dshs[dot]state[dot]tx[dot]us.
Texas law requires birthing facilities to offer parents a screening test to determine whether their newborn has hearing loss or impairment. The testing must occur during a child's birth admission, though some facilities are exempt. (See "Bill Would Eliminate Screening Exemption.")
If a newborn doesn't pass the hearing screen at birth, the baby should receive an outpatient follow-up hearing screen, which can be conducted by the birthing facility, an audiologist, or a primary care physician who has the appropriate equipment and training.
A list of audiologists is available on the DSHS website.
Should a baby not pass the follow-up screen, a local audiologist and/or physician can refer parents to the Early Childhood Intervention (ECI) program to assist with intervention services. The audiologist will perform more testing and may recommend hearing aids and interventional services. Testing will also allow an audiologist to identify the kind of hearing loss and degree of hearing loss a baby has. ECI will work with parents to develop a plan to ensure the newborn receives necessary services.
ECI is a program of the Texas Department of Assistive and Rehabilitative Services (DARS) that provides evaluations – at no cost to families – to determine eligibility and the need for services, such as audiology, family counseling, occupational and physical therapy, vision services, speech-language therapy, and more.
"Children with hearing problems need a medical home, and the TEHDI program contributes to setting up a system of care for infants with hearing loss or impairment. Using the TEHDI system, physicians can track their patients and ensure those who need intervention receive it," Dr. Gong said.
For more information about the TEHDI program, call (800) 252-8023 or log on to the DSHS website. The site features a practitioner's guide for early hearing loss detection and intervention, informational brochures physicians can share with parents, a follow-up report form, and other resources for audiologists and physicians.
Physician Participation Needed
At press time, approximately 270 physicians used the TEHDI program's Provider Access Tool. DSHS hopes to see that increase by 50 percent over the next two years by enhancing outreach, education, and communication. According to the Texas Medical Board's September 2010 statistics, Texas is home to 4,434 licensed pediatricians.
DSHS has identified some reasons many primary care physicians aren't using the program's tracking system.
"Some physicians tell us they don't have the time or staff resources to enter information into the TEHDI data system, some aren't aware of it or how to access it, and others say they don't see enough patients who need follow-up to benefit from using the system," said David Martinez, DSHS Newborn Screening Unit manager.
Lakshmy Rajagopalan, MD, a neonatal-perinatal specialist practicing in Houston, says it's vital that more pediatricians and primary care physicians use the TEHDI tracking system. Dr. Rajagopalan is a TEHDI champion for the Texas chapter of the American Academy of Pediatrics (AAP).
In addition, she is a member of the AAP Early Hearing Detection and Intervention Task Force and receives updates on hearing loss and impairment interventions regularly and educates other physicians about the importance of newborn hearing screening.
"In Texas, we do a great job of screening, but not every baby born in a hospital has a medical home at the time of discharge. Once the screening is performed and the results are passed to the newborn's family, that information doesn't always make it directly to the physician," she said. "If the parents don't relay the screening results to a physician, that doctor can access the TEHDI system and figure out whether a baby has passed the screening."
Dr. Rajagopalan encourages pediatricians and other primary care doctors to use the TEHDI system to ensure every newborn they see has been screened for hearing loss and to make sure those who don't pass the initial screen receive a follow-up hearing test.
Dr. Rajagopalan says physicians should use the following "1-3-6 process" for early hearing loss detection and intervention:
DSHS sends monthly postcards to primary care physicians for babies identified by the TEHDI system as not passing the initial hearing screen. The notice prompts physicians to access the system, view hearing test results, and proceed with or refer parents for further testing as needed. In addition, DSHS encourages primary care physicians to update the follow-up information in the system.
Jack Seidel, MD, a Dallas pediatrician, has received two postcards from DSHS. He says it turned out that DSHS contacted him about babies who had already returned for repeat hearing screens, but he says he didn't mind double-checking whether his patients required follow-up care.
"Conceptually, the TEHDI program is a great opportunity for physicians to potentially catch babies with hearing loss or impairment who otherwise would miss important follow-up care," Dr. Seidel said.
DSHS has also developed educational materials specifically for physicians and offers free continuing medical education (CME) credits for presentations on the medical home, prenatal care, and universal newborn hearing screening.
CME credits are available for these three modules. For additional information about CME, physicians should contact TEHDI Coordinator Mary Gwyn Allen at (800) 252-8023, ext. 7726, or visit the Newborn Screening website.
Additionally, DSHS has received grant money from the Health Resources and Services Administration (HRSA) to produce educational materials for health professionals and from the Centers for Disease Control and Prevention (CDC) to investigate options for integrating and sharing newborn hearing screening data. (See "Grants Help DSHS Reach Physicians, Improve Data Sharing.")
Challenges to Follow-Up Care
According to DSHS, the estimated incidence of hearing loss is two or three per 1,000 births. With approximately 400,000 births per year in Texas, that means about 1,000 babies have hearing impairment or hearing loss annually. The health department's most current data for March 2010 to May 2010 indicate approximately 2,880 babies needed newborn hearing screening follow-up, and about 1,170 (53.3 percent) reported receiving follow-up care.
Dr. Rajagopalan says 98 percent of Texas newborns receive the hearing screening each year, but the tracking and reporting of follow-up care need to improve. "I think most newborns are probably receiving follow-up care, but many times that data doesn't make it into the TEHDI system," she said.
DSHS uses the data gathered for follow-up testing to verify timely screening of newborns, track follow-up of outpatient screening, verify diagnosed cases of hearing impairment and/or loss, and track referrals to ECI. The department also uses the data in legislatively mandated reporting, HRSA grant reporting, and annual data survey for CDC.
Mr. Martinez says the health department also uses data to monitor and evaluate the TEHDI program and identify any need for training and technical assistance to health professionals on how to use it. DSHS may use the data to monitor for health events of epidemiological importance.
Access to care and coordination of care challenges exist. According to Mr. Martinez, families and birthing facilities may have difficulty identifying the correct primary care physician for outpatient referral, or a family may lack a primary care medical home. In addition, he says, the hearing screening may be performed before the child's name is final on a birth certificate, and demographic information can be inaccurate or can change.
"The limited numbers of pediatric audiologists statewide can be a challenge, as can obtaining the required parental consent for screening, reporting, or granting access to the patient's record," he said.
According to DSHS, for the 2010 fiscal year ending in August, Texas had 1,097 licensed audiologists, in addition to 32 licensed audiologist interns and four audiologist assistants.
DSHS doesn't have a way to track the number of parents who decline release of any test result to the department. Mr. Martinez says that each year about 2 percent of parents request the records be deidentified before allowing the results to be recorded in the TEHDI system. In other words, parents allow release of the results of the screens, excluding patients' names.
Crystal Conde can be reached by telephone at (800) 880-1300, ext. 1385, or (512) 370-1385; by fax at (512) 370-1629; or by e-mail at crystal.conde[at]texmed[dot]org.
TEHDI Program Details
House Bill 714 by Rep. Elliott Naishtat (D-Austin), passed in 1999, created the Texas Early Hearing Detection and Intervention (TEHDI) program administered by the Texas Department of State Health Services (DSHS).
The bill, actively supported by TMA, contains these provisions:
In addition, DSHS must provide software and technical assistance to birth facilities; certify and monitor standards for birth facility programs; and ensure intervention services are available to families for a newborn identified as having hearing loss.
For more information about TEHDI, call (800) 252-8023 or log on to the DSHS website.
Bill Would Eliminate Screening Exemption
Not all birthing facilities must perform hearing screening under current Texas law.
At press time, about 33 hospitals had an exempt status, the majority of which were reporting screen results into the Texas Early Hearing Detection and Intervention (TEHDI) program, according to David Martinez, Texas Department of State Health Services (DSHS) Newborn Screening Unit manager. Military hospitals and home births are exempt, as are facilities operated by a midwife.
Additionally, hospitals in counties with fewer than 50,000 residents and birthing centers in counties with fewer than 50,000 residents and fewer than 100 births annually are exempt from the statute.
According to DSHS, if a newborn was born at home or in a birthing center that didn't conduct the hearing screening, parents may have a local audiologist or primary care physician who has the appropriate equipment and training perform the test. Parents may also check with local hospitals to inquire as to whether they offer hearing screening services.
Mr. Martinez says all nonexempt hospitals have implemented a newborn hearing screening program.
In November, Sen. Jane Nelson (R-Lewisville) filed Senate Bill 229, legislation that would eliminate the exemption for hospitals in counties with fewer than 50,000 residents and birthing centers in counties with fewer than 50,000 residents and fewer than 100 births annually.
"Hearing loss is the most prevalent of all congenital conditions, and newborns should be diagnosed and treated as early as possible," Senator Nelson said.
The bill doesn't lift the newborn hearing screening exemption for military hospitals, home births, and facilities operated by a midwife.
Grants Help DSHS Reach Physicians, Improve Data Sharing
The Health Resources and Services Administration (HRSA) awarded the Texas Department of State Health Services (DSHS) grant funding for April 2008 through March 2011 to produce educational materials for health professionals and culturally sensitive resources for families. DSHS has created a comprehensive Texas Early Hearing Detection and Intervention (TEHDI) educational training curriculum consisting of the following eight modules:
For more information, call Mary Gwyn Allen at (800) 252-8023, ext. 7726, or e-mail MaryGwyn.Allen[at]dshs[dot]state[dot]tx[dot]us.
DSHS also offers free online education with CME credit through the Texas Health Steps program. A module specific to Newborn Hearing Screening is available online.
The Centers for Disease Control and Prevention awarded DSHS with grant money in 2008 to investigate options for integrating and sharing newborn hearing screening data. The grant period ends in June this year.
In 2010, DSHS contracted for an independent assessment of the TEHDI system.
"A key recommendation of that assessment is to integrate other sources of data and the TEHDI system. DSHS is pursuing an 'automated demographic messaging project' to add standardized data fields to enhance data sharing and to allow hospitals to transfer data directly into the TEHDI system. This will improve data quality and avoid duplicative data entry, as well as position health professionals and the TEHDI system to adopt the national standards for electronic medical records," said David Martinez, DSHS Newborn Screening Unit Manager.