Grants and Contracts Details
Description
Pediatric hearing loss is the most common neonatal sensory disorder in the United States with an incidence of
approximately 1 per 1000 births. The sense of hearing is vital during the early years of life for the development
of speech, language, and cognition. Deafness in early childhood can result in lifelong learning delay and
disability leading to adulthood challenges in education and employment. The economic costs of hearing loss
and impaired language development are substantial. Early identification and intervention can prevent adverse
educational and social consequences and this occurs through mandatory infant screening and subsequent
timely definitive audiological diagnostic testing. Standard practice dictates that infants should undergo a
hearing screen test within 1 month after birth and if it is abnormal then children should undergo diagnostic
audiological assessment with confirmation of a diagnosis of hearing loss no later than 3 months after birth.
Many infants fail to obtain or are delayed in receiving this diagnostic testing after a failed infant screening at
birth. Families in rural areas, such as Appalachia, may have limited diagnostic resources and extensive travel
distances and may lack understanding of the seriousness of pediatric hearing loss.
This study seeks to address non-adherence to standard recommendations during this crucial time frame
between mandatory newborn hearing testing and definitive audiological testing by developing and
implementing a novel intervention program utilizing a patient navigator to promote adherence to recommended
diagnostic audiological testing. Patient navigators have been utilized with success to promote adherence to
clinical recommendations in healthcare settings such as colonoscopy screening programs and comprehensive
cancer care. Navigators provide emotional, educational, and logistical support to patients to bring them into
complex medical systems and enable them to receive the care they need in a timely manner. Patient
navigation has not been utilized in early infant hearing screening and diagnostic testing. The hypothesis of this
study is that a patient navigator will reduce the percentage of participants that do not receive diagnostic
audiological testing within 3 months after birth. We seek to enroll 220 parents of children who fail newborn
hearing screening into a randomized prospective study. An experimental group will have weekly contact with a
patient navigator after birth while the control group will have no contact with a navigator. Adherence to
recommendations by obtaining audiological outpatient diagnostic testing before 3 months after birth will be the
primary endpoint measure. Secondary observational measures will include time to initial diagnostic hearing test
and the time to final diagnosis after birth. This research seeks to establish the utility of a patient navigator
program and improve access to hearing healthcare and expedite diagnosis of childhood hearing loss.
PUBLIC HEALTH STATEMENT
Hearing loss is the most common sensory congenital disorder and this condition is diagnosable and treatable.
Children that are born with hearing loss have to undergo several hearing tests to diagnose the condition and
many families are delayed in receiving this testing or never obtain the needed testing. This research employs a
new method for helping children with hearing loss get timely care by using a patient navigator, who is someone
who teaches and provides emotional and social support for parents of these children.
SPECIFIC AIMS
Congenital hearing loss is a common problem that may be detected in a timely manner through noninvasive
audiological testing modalities. It is recommended that a diagnosis of hearing loss should be made
before 3 months of age. Deafness in early childhood can result in lifelong learning delay and disability;
however, early identification and intervention can prevent adverse educational and social consequences. The
consequences of delayed diagnosis and/or failure to appropriately intervene for infants with hearing loss can
be significant delay in language, cognitive, and social development. Such delays may lead to adulthood
challenges in education and employment. The economic costs of hearing loss and delayed/impaired language
development are substantial, which includes medical costs, education, lost wages, and unemployment.
The diagnosis of this detectable sensory deficit is often delayed, especially in regions of rural
healthcare inequity, such as Appalachia. This region is faced with multiple barriers to care such as poverty,
limited education, cultural misconceptions about healthcare, and a shortage of local healthcare providers and
services. Children throughout rural Appalachian regions of Kentucky, as well as, non-Appalachian regions of
Kentucky lag behind the national average age of appropriate hearing diagnostic testing. A significant factor in
the diagnosis delay of childhood hearing loss is the lack of adherence to recommended outpatient diagnostic
testing within the first 3 months after birth. Failure to obtain this testing delays diagnosis and may lead to
permanent language impairment. Lack of parental knowledge about hearing loss and the recommended
testing, lack of economic resources, and lack of psychosocial support may impede adherence to the testing.
We believe that these problems can be rectified with a novel patient navigator program. A trainedpatient
navigator is a professional that can provide emotional and psychological support for parents of children
who fail infant screening and can provide assistance and positive reinforcement through the hearing diagnostic
process. This type of program has the potential to benefit families of young children who have failed newborn
hearing screening testing by providing education, psychosocial support, and accountability about congenital
hearing loss and the hearing healthcare of their child. Although successfully implemented in other healthcare
fields, patient navigators have not been utilized in this field of infant hearing evaluation. We seek to assess the
effectiveness of a patient navigator to promote adherence to recommended outpatient timely audiological
testing of infants after failed infant hearing screening. If this program is found to be effective it could have wide
application for the diagnosis of children with hearing loss, especially in areas of hearing healthcare disparity.
Specific Aim 1: Examine the effectiveness of the patient navigator program to increase adherence to
recommended audiological testing within 3 months after birth.
Hypothesis: The utilization of a patient navigator will increase adherence to audiological testing within 3
months after birth, compared with those who do not utilize a navigator.
Parents of children who fail infant hearing screening at birth at the University of Kentucky will be
enrolled in the study and randomized into either a patient navigator group or the standard practice
group. We will compare the failure to follow-up for testing rates between groups.
Specific Aim 2: Assess the effect of the patient navigator program on the timing of diagnostic testing.
Hypothesis: The utilization of a patient navigator will result in earlier diagnostic testing in children who
fail newborn hearing screening than those who receive the standard of care.
Of those enrolled subjects, the age of the children when they obtain diagnostic testing will be assessed
and compared between the patient navigator group and the standard practice group. This observational
aim will further quantify the effect of the navigator on diagnostic testing timing.
Specific Aim 3: To assess socioeconomic, educational, and demographic factors involved in nonadherence
to infant hearing testing recommendations.
This aim will be used to characterize those lost to follow-up to assist us in generalizing our results.
Status | Finished |
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Effective start/end date | 3/1/15 → 2/28/19 |
Funding
- National Institute on Deafness & Other Communications: $685,149.00
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