Promoting Early Diagnosis of Congenital Hearing Loss Through Patient Navigation

Grants and Contracts Details


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.
Effective start/end date3/1/152/28/19


  • National Institute on Deafness & Other Communications: $685,149.00


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