Clinical and Health Affairs
Newborn Hearing Screening
An Assessment of Knowledge, Attitudes, and Practice among Minnesota Physicians
By Nicole C.M. Brown, M.S.N., C.P.N.P., Katherine James, Jianmin Liu, M.S., Penny A. Hatcher, M.S.N., Dr.P.H., and Yaoli Li, M.D., CCC-A
Abstract
Hearing loss is one of the most common birth defects. Without proper early screening, it may go undetected until a child demonstrates significant and sometimes irreversible communication delays. The Minnesota Department of Health in collaboration with 2 national organizations conducted a survey of Minnesota physicians regarding their awareness of its Early Hearing Detection and Intervention (EHDI) program. Results indicate that the majority (133/150 or 89%) of respondents were aware of the program and understood that early screening was “very important.” Although many physicians (82/151 or 54%) reported feeling “very confident” about their ability to explain the hearing screening process to parents, only 21% indicated that their training prepared them to meet the needs of infants with hearing loss. Survey respondents reported “a great need” for protocols for follow-up after a problematic screening (94/148 or 64%), information about early intervention options (86/147 or 59%), a contact for more information (89/147 or 61%), and parent education resources (86/147 or 59%). These findings will be used to develop materials and resources to broaden physicians’ knowledge and understanding of the state’s EHDI program.
Permanent childhood hearing loss affects between 200 and 400 infants born in Minnesota each year, twice the number affected by all congenital and heritable disorders included in the state’s mandated newborn screening panel combined.1,2 It is associated with delayed language acquisition, learning, and speech development.3-5 When compared with peers who have normal hearing, deaf students, on average, graduate from high school with language and academic achievement levels below the 4th-grade level; in addition, students with unilateral hearing loss are found to be 10 times more likely to fail a grade.6 Early diagnosis and intervention, however, can reduce the lifelong disability associated with hearing loss. Children whose hearing loss is identified at or before 6 months of age and who receive appropriate early intervention services such as amplification and exposure to various communication options including sign language and verbal communication have significantly larger vocabularies and better expressive and receptive language skills than those whose hearing loss is discovered after 6 months.7,8 To ensure early detection and intervention for children with hearing loss, the National Institutes of Health in 1993 endorsed universal newborn hearing screening for infants within the first 3 months of life.9 Since 1997, Minnesota has had a voluntary Early Hearing Detection and Intervention (EHDI) program. The program’s goal is to screen for hearing loss by 1 month of age, diagnose permanent hearing loss by 3 months of age, and enroll children with permanent loss in early intervention programs by 6 months of age. Screening methods used to test for permanent hearing loss include otoacoustic emissions and/or automated auditory brainstem response testing.
A centralized data collection and follow-up system provides public health professionals at the Minnesota Department of Health with the infrastructure to monitor the state’s progress in meeting the EHDI program’s screening goals and reducing the number of children who are lost to follow-up. The success of the EHDI program depends, in part, on complete and accurate reporting of hearing screening and diagnostic results by hospitals, primary care providers, and audiologists.
The Boys Town National Research Hospital and the National Center for Hearing Assessment and Management have done several studies assessing physicians’ knowledge of, attitudes toward, and practices regarding hearing screening and intervention. This article presents the Minnesota-specific results of one survey of physicians in states with EHDI programs. The Minnesota Department of Health will use the findings to create educational materials and other resources to broaden physician knowledge and understanding of EHDI programs and best practices for identifying and treating hearing loss.
Methods
Members of the Minnesota Chapter of the American Academy of Pediatrics were invited to participate in a survey on newborn hearing screening and follow-up. The 22-item questionnaire they were asked to complete assessed their knowledge of and attitudes toward the EHDI program and their practices regarding screening and early intervention. Respondents were asked to give short answers to some questions, answer “yes” or “no” to others, and use a 4- and 5-point Likert scale to indicate their degree of agreement with given statements. Staff from the National Center for Hearing Assessment and Management in Logan, Utah, entered, coded, and cleaned the data. Minnesota Department of Health staff classified the survey questions into categories (ie, those that described physician knowledge and perceived competence, showed training preferences, and captured attitudes and practices), and determined correct responses for several questions that were deemed to have either a single, correct response or a range of acceptable values.
Descriptive statistics were computed. Continuous variables were analyzed by quartile, and for questions assessing knowledge or competence, “no” and “not sure” responses were combined into a single category.
Results
Of the 643 members of the Minnesota Chapter of the American Academy of Pediatrics who were contacted, 153 (24%) participated in the survey. The majority of respondents were female (83/147 or 57%), practiced as pediatricians (128/151 or 84%), worked primarily in a private practice or community clinic (118/150 or 79%), and were located in a metropolitan area (119/143 or 83%). Slightly fewer than half reported caring for a pediatric population for 10 years or less (65/139 or 47%).
Knowledge of Screening and Treatment Options
The majority of respondents (133/150 or 89%) were aware of Minnesota’s EHDI program (Table), but few (5/90 or 5%) correctly reported the approximate cost ($30) of screening, with 36% (32/90) of physicians underestimating and 59% (53/90) overestimating it. Most respondents were able to correctly identify meningitis, family history, and history of cytomegalovirus infection as risk factors for late-onset permanent childhood hearing loss, but only 58% (89/153) identified having spent more than 48 hours in a neonatal intensive care unit as a risk factor.10 Frequent colds (26/153 or 17%), hypotonia (45/153 or 29%), a mother age 40 or older (22/153 or 14%), and congenital heart disease (39/153 or 25%) were incorrectly identified as risk factors for late-onset hearing loss.
More than 75% (115/149) of physicians correctly indicated that children younger than 1 month of age who did not pass an initial hearing screen could be rescreened for permanent hearing loss. However, proportionately fewer physicians (77/140 or 55%) correctly indicated that such children could be definitively diagnosed with permanent hearing loss, could begin wearing hearing aids (46/142 or 32%), or should be referred to early intervention services after diagnosis (87/145 or 60%). Eighty percent (123/153) identified infants with profound bilateral hearing loss as candidates for cochlear implants, but some incorrectly identified infants with bilateral mild-moderate (23/153 or 15%), unilateral mild-moderate (4/153 or 3%), and unilateral profound (38/153 or 25%) hearing loss as candidates for implants. Nearly 20% (30/153) of respondents were unsure which infants would be candidates for cochlear implants.
Attitudes and Practice
The overwhelming majority of physicians (136/147 or 93%) reported having received initial screening results for more than half of the newborns seen in their practice during the past year, and the majority indicated that screening was “very important” (120/150 or 80%) and worth the cost (113/150 or 75%). For most physicians, the number of children with a permanent hearing loss seen in their practice during a recent 3-year period was low (mean= 4.19 per 3 years). Eighty-nine percent (137/153) reported routine referrals of pediatric patients with confirmed hearing loss to an ENT/otolaryngologist, but just 13% (20/153) and 1% (2/153) routinely referred to a geneticist or ophthalmologist, respectively. Respondents reported that other routine referrals were made to audiologists (76/153 or 50%), speech language pathologists (49/153 or 32%), and child development specialists (26/153 or 17%).
Perceived Competence, Training Preferences, and Resources for Families
The vast majority of respondents (117/149 or 79%) said they felt their training did not adequately prepare them to meet the needs of infants with permanent hearing loss. Most respondents (86/153 or 56%) said literature is their primary source of information about newborn hearing screening. Others received information during Grand Rounds and other hospital-based training sessions, at educational meetings, and from other physicians and audiologists.
Nearly 55% (82/152) reported feeling “very confident” about explaining the newborn hearing screening process to parents who had questions about their children’s results. By contrast, 15% (23/149) of physicians reported high levels of confidence in talking with parents about the causes of their child’s hearing loss, its consequences, or early intervention options (Figure).
By a wide margin, survey respondents reported “a great need” for follow-up protocols after screening (94/148 or 64%), information about when to use certain early intervention options (86/147 or 59%), a contact for more information (89/147 or 61%), and parent/patient education resources (86/147 or 59%). Nearly two-thirds (96/147 or 65%) indicated that laminated cards with clear protocol steps that they can follow, a frequently updated Web site (96/147 or 65%), and educational brochures for parents of patients (92/147 or 63%) would be “very helpful” in their practice.
Discussion
Primary care providers such as physicians and advanced practice nurses are often the first point of contact for families of infants who have failed the newborn hearing screening. They are responsible for explaining screening results accurately, making appropriate and timely referrals for rescreening or diagnosis, and assisting the family in finding educational resources and/or support services. The vast majority of respondents reported that they did not feel their professional training adequately prepared them to meet the needs of infants with permanent hearing loss. Although most correctly indicated that infants younger than 1 month could be screened for and definitively diagnosed with permanent hearing loss, many did not know that these young infants could begin wearing hearing aids or be referred for early intervention services. These results suggest that physicians may be more knowledgeable about screening and diagnosis than treatment and intervention options.
Our findings showed that the vast majority of respondents were aware of the importance of referrals to ENT/otolaryngologists but few routinely referred families to a geneticist or ophthalmologist. Although some hearing loss is hereditary, the etiology is uncertain in as many as 30% to 40% of children. The 2000 Joint Committee on Infant Hearing recommends that when physical and laboratory investigations fail to define the etiology of hearing loss, families should be offered the option of a genetic evaluation and counseling and that every infant with hearing loss receive an ophthalmologic evaluation at regular intervals to rule out concomitant late-onset vision disorders, as hearing loss may be associated with vision loss in disorders such as Usher syndrome.11 Because many children with permanent hearing loss will also demonstrate developmental delays or other disabilities, additional specialists such as developmental pediatricians, neurologists, cardiologists, and nephrologists may need to be consulted.
A physician’s responsibility to monitor hearing function does not end with a passing result on the newborn hearing screen. Conditions such as cytomegalovirus, for example, can result in late-onset hearing loss. In monitoring the general well-being and health of an infant, it is essential that the physician review the infant’s and the family’s medical history for the presence of risk factors that require monitoring for delayed onset and/or progressive hearing loss. For children at risk, a referral for audiologic evaluation is indicated.
Although permanent hearing loss is one of the most common birth defects, it is not a condition that most physicians encounter on a daily basis. For that reason, primary care physicians often don’t feel confident about explaining the results of a problematic screening to parents.
To increase physicians’ knowledge of the hearing screening process and, thus, their confidence in explaining it and its results to parents, a two-pronged educational approach is needed. The first would make general hearing screening information available to all primary care providers. The second approach involves giving the primary care physicians of children newly identified with hearing loss immediate access to specific, easily accessible information about the condition, follow up, and interventions.
Although the results of this study may be limited by low physician response rates and possible selection bias by those who responded to the survey, Minnesota Department of Health program staff can, nonetheless, use respondents’ recommendations to begin taking steps to expand and emphasize existing educational resources for primary care providers and families. The department currently has resources for physicians and other caregivers available online at its EHDI Web site (http://www.health.state.mn.us/newbornscreening); this includes a list of regional audiology, diagnostic, and habilitation centers for infants and families, brochures for parents, information about risk factors, newsletters, and fact sheets. The Department of Health is also creating new tools to increase provider knowledge and understanding of best practices regarding hearing screening and intervention options. The goal is for our resources to be specific, immediate, and easily accessible for physicians.
Our findings suggest that the greatest need for information relates to the care of an infant with permanent hearing loss, including follow-up screening and early intervention. When an infant or child with permanent hearing loss is reported to the Minnesota Department of Health, the patient’s physician will be mailed a copy of an EHDI medical guideline for appropriate follow-up care. This guideline was designed by the American Academy of Pediatrics and the National Center for Hearing Assessment and Management and is being modified for physicians in Minnesota.
We believe that providing this much-needed information will increase physicians’ confidence, knowledge, and understanding of newborn hearing screening and their role in the care of a child with permanent hearing loss.
Conclusion
Because of its significant effect on language, speech, and cognitive and social development, hearing loss can be considered a developmental emergency, and early treatment and/or early intervention services by a qualified professional are time critical. All newborns should be screened for permanent hearing loss within the first month of life; those who fail the screening should be evaluated for a definitive diagnosis by a pediatric audiologist. When a diagnosis of permanent hearing loss is made, referrals should be made to appropriate specialty care providers and the children should be given appropriate early interventions.
Because primary care physicians do not see many children with permanent hearing loss in their practice, many do not feel adequately prepared to meet those patients’ needs. In order to better prepare physicians, the Minnesota Department of Health is using the findings of this survey to develop educational and other resources to broaden physician knowledge and understanding of EHDI programs and best practices regarding the diagnosis and treatment of permanent childhood hearing loss. MM
Nicole Brown and Yaoli Li are the Universal Newborn Hearing Screening and Intervention/Early Hearing Detection and Intervention Program coordinators for the Minnesota Department of Health. Katherine James and Jianmin Liu are graduate students in the University of Minnesota’s School of Public Health. Penny Hatcher is the supervisor of newborn and child health programs at the Minnesota Department of Health.
Acknowledgement
The authors gratefully acknowledge consultative and technical assistance provided by Judy Punyko, Ph.D., from the Minnesota Department of Health and Kathy Sweetman, M.D., from the Minnesota Chapter of the American Academy of Pediatrics. This publication was supported by a Universal Newborn Hearing Screening and Intervention grant (H61-06-001) from the Health Resource and Services Administration’s Maternal and Child Health Bureau, and the Early Hearing Detection and Intervention grant (UR3/CCU524777-01) from the Centers for Disease Control and Prevention.
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