With the incidence of approximately 1.5 per 1000 births, pediatric hearing loss is the most common neonatal sensory disorder in the United States. During the early years of life, the sense of hearing is vital for the optimal development o speech, language, and cognition. Deafness in early childhood can result in lifelong learning delay and disability leading to adulthood challenges in education, employment, and social life. The economic costs of hearing loss and impaired language development are substantial. Early identification and intervention can prevent these adverse economic, educational, and social consequences. National standards dictate that infants who are deaf or hard of hearing should be diagnosed by 3 months of age and subsequent intervention services should be initiated no later than 6 months of age. Unfortunately, 24% of infants have no diagnostic testing after abnormal infant screening and 29% of children with hearing loss are not enrolled in intervention services.1 Children from rural Appalachia and economically depressed regions have poor adherence to follow-up testing and are often delayed in diagnosis and treatment of pediatric hearing loss.2 The process of obtaining timely hearing health care for infants is complex and many factors, such as communication breakdowns, lack of decisional support, and poor care coordination, contribute to the disparity. Early infant hearing detection and intervention (EHDI) i coordinated on a state level and, in spite of multiple initiatives to decrease EHDI non-adherence, there is no established method to address this problem. In fact, there is no evidence-based research that addresses the effectiveness of initiatives designed to decrease non-adherence for diagnosis or intervention.3 The research proposed in this application seeks to rectify this health disparity by addressing non-adherence and delays in the EHDI process during the first year of life through a novel intervention involving a patient navigator program (PNP). Navigators are trained healthcare workers who educate patients on health conditions and healthcare systems and expeditiously facilitate adherence to complex healthcare. PNPs have successfully decreased non- adherence to clinical testing and treatment in other health areas (e.g., cancer) but have not been utilized in the EHDI field. The hypothesis of this study is that a PNP will significantly decrease non-adherence to and timing of diagnostic audiological testing and intervention for infant hearing loss.
The specific aims are to 1) examine the efficacy of a PNP to decrease non-adherence to and timing of recommended infant audiological testing within 3 months after birth, in Appalachian and non-Appalachian participants, 2) assess the efficacy of a PNP to decrease non-adherence to and timing of hearing aid fitting in infants diagnosed with hearing loss, and 3) determine the maternal socioeconomic, educational, demographic and infant factors involved in non- adherence and delays to testing and treatment. We will accomplish Aim 1 by enrolling mother-child dyads, in which the child fails newborn hearing screening, into a randomized prospective study. The participants will be stratified into Appalachian and non-Appalachian based on county of residence and then within each stratum the subjects will be randomized into either the patient navigator group or the standard of care group. The navigator group will have weekly phone contact with a patient navigator after birth while the control group will receive the standard of care only and will have no contact with a navigator. Non-adherence to obtain audiological outpatient diagnostic testing before 3 months after birth (Aim 1) will be the primary outcome measure. Infants identified with hearing loss at our institution will be enrolled in Aim 2 and randomized into a patient navigator group or standard of care group, similar to Aim 1. Non-adherence with fitting of hearing aids before 6 months of age will be the primary outcome for Aim 2. Secondary outcomes will include timing of diagnostic testing after birth (Aim 1) and the timing of hearing aid fitting after diagnosis (Aim 2.
Aim 3 will characterize maternal and infant factors in non-adherence. The candidate is a clinician scientist at the University of Kentucky in the Department of Otolaryngology who has demonstrated commitment to a career in clinical and translational research. The mentors in this application, Nancy Schoenberg, Ph.D., Karl White, Ph.D., Richard Kryscio, Ph.D., will provide balanced training and guidance in the areas of health disparity, infant hearing loss and intervention initiatives, and clinical research design and implementation. The overall goal of this K23 award is to provide the candidate with research and training activities that are focused on expediting diagnosis and treatment of infant hearing loss in the setting of health disparity. The training will expand the candidate's knowledge and experience with pediatric hearing health disparities research, EHDI research and patient navigator integration, and clinical trial design and analysis. The candidate is uniquely poised to investigate methods to expedite rural congenital hearing loss diagnosis and intervention. This application is intended to result in a research portfolio, including subsequent R01 funding, devoted to expediting hearing loss intervention in children who face barriers to care. The overall career goal of the candidate is to become an independently funded surgeon scientist focused on transforming the delivery of effective multidisciplinary hearing interventions. These goals are in line with NIH and NIDCD priority areas of improving diagnosis and treatment of hearing loss and developing evidence-based approaches that increase awareness, access, and affordability for those experiencing health disparities.

Public Health Relevance

Hearing loss is the most common sensory congenital disorder and this condition is diagnosable and treatable. Children who are born with hearing loss must undergo several hearing tests to diagnose the condition and many families are delayed in receiving this testing or never obtain the necessary testing and treatment. This research evaluates a new method for helping children with hearing loss obtain timely care by using a patient navigator, which is a trusted layperson who provides educational support for parents of these children by making a personal connection.

National Institute of Health (NIH)
National Institute on Deafness and Other Communication Disorders (NIDCD)
Mentored Patient-Oriented Research Career Development Award (K23)
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Communication Disorders Review Committee (CDRC)
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Rivera-Rentas, Alberto L
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University of Kentucky
Schools of Medicine
United States
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Fletcher, Kyle T; Horrell, Erin M Wolf; Ayugi, John et al. (2018) The Natural History and Rehabilitative Outcomes of Hearing Loss in Congenital Cytomegalovirus: A Systematic Review. Otol Neurotol 39:854-864
Noblitt, Bryce; Alfonso, Kristan P; Adkins, Margaret et al. (2018) Barriers to Rehabilitation Care in Pediatric Cochlear Implant Recipients. Otol Neurotol 39:e307-e313
Fiorillo, Caitlin E; Hughes, Allyson L; I-Chen, Chen et al. (2018) Factors associated with patient no-show rates in an academic otolaryngology practice. Laryngoscope 128:626-631
Bush, Matthew L; Kaufman, Michael R; McNulty, Beth N (2017) Disparities in access to pediatric hearing health care. Curr Opin Otolaryngol Head Neck Surg 25:359-364
Bush, Matthew L; Taylor, Zachary R; Noblitt, Bryce et al. (2017) Promotion of early pediatric hearing detection through patient navigation: A randomized controlled clinical trial. Laryngoscope 127 Suppl 7:S1-S13
Fiorillo, Caitlin E; Rashidi, Vania; Westgate, Philip M et al. (2017) Assessment of Behavioral Problems in Children With Hearing Loss. Otol Neurotol 38:1456-1462
Chan, Stephen; Hixon, Brian; Adkins, Margaret et al. (2017) Rurality and determinants of hearing healthcare in adult hearing aid recipients. Laryngoscope 127:2362-2367
Barnett, Margaret; Hixon, Brian; Okwiri, Neville et al. (2017) Factors involved in access and utilization of adult hearing healthcare: A systematic review. Laryngoscope 127:1187-1194
Bush, Matthew L; Dobberpuhl, Mitchell R; Maxwell, Stevie et al. (2017) In Response to Letter to the Editor Entitled, ""The Role of Radiation in Tympanojugular Paragangliomas Needs to be Re-evaluated"". Otol Neurotol 38:1062
Bush, Matthew L; Thompson, Robin; Irungu, Catherine et al. (2016) The Role of Telemedicine in Auditory Rehabilitation: A Systematic Review. Otol Neurotol 37:1466-1474

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