Objective The purpose of this study is to assess regional parental barriers in the diagnostic and therapeutic process following abnormal newborn hearing screening (NHS) testing. Study Design Cross-sectional questionnaire study Setting Tertiary medical center Patients Parents of infants who failed NHS in Kentucky from January 2009 – February 2012 Main Outcome Measure Demographic information, county of origin, and attitudes and perceptions regarding NHS and barriers in the NHS diagnostic process. Results There were 460 participants in the study, which included25.4% of parents were from the Appalachian region. 21% of Appalachian parents found the process on newborn hearing testing difficult. Appalachian parents were more likely to have no more than 12 years of education (OR 1.7, p=0.02) and Medicaid insurance (OR 2.3, p<0.001) compared with non-Appalachian parents. A higher percentage of Appalachian parents were unaware of the NHS results at the time of hospital discharge than non-Appalachians (14% v. 7%, p=0.03). Distance from the diagnostic/therapeutic center represented was a significant barrier for Appalachian parents (OR 2.8, p=0.001). Compared with urban parents, a greater percentage of rural parents had never heard of a cochlear implant (p=0.01). Appalachian parents expressed a strong interest in telemedicine and a desire for closer services. Conclusion Multiple barriers including education, distance, accessibility, socioeconomic factors can affect timely diagnosis and treatment of congenital hearing loss for children residing in rural areas. Educational and telemedicine programs may benefit parents in Appalachia, as well as parents in other rural areas.

Objective To examine the incidence of pediatric congenital hearing loss and the timing of diagnosis in a rural region of hearing healthcare disparity. Study design Data from the Kentucky newborn hearing-screening program was accessed to determine the incidence of congenital hearing loss in Kentucky, both in the extremely rural region of Appalachia and non-Appalachian region of Kentucky. We also performed a retrospective review of records of children with congenital hearing loss at our institution to determine the timing of diagnostic testing. Results In Kentucky, during 2009–2011, there were 6,970 newborns who failed hearing screening; the incidence of newborn hearing loss was 1.71 per 1000 births (1.28/1000 in Appalachia and 1.87/1000 in non-Appalachia). 23.8% of Appalachian newborns compared with 17.3% of non-Appalachian children failed to obtain follow-up diagnostic testing. Children from Appalachia were significantly delayed in obtaining a final diagnosis of hearing loss compared with children from non-Appalachian regions (p=0.04). Conclusion Congenital hearing loss in children from rural regions with hearing healthcare disparities is a common problem and these children are at risk for a delay in the timing of diagnosis, which has the potential to limit language and social development. It is important to further assess the causative factors and develop interventions that can address this hearing healthcare disparity issue.

Infant hearing loss has the potential to cause significant communication impairment. Timely diagnosis and intervention is essential to preventing permanent deficits. Many infants from rural regions are delayed in diagnosis and treatment of hearing loss. The purpose of this study is to characterize the barriers in timely infant hearing healthcare for rural families following newborn newborn hearing screening (NHS) testing. Using stratified purposeful sampling, the study design involved semi-structured phone interviews with parents/guardians of children who failed NHS testing in the Appalachian region of Kentucky between 2012 and 2014 to describe their experiences with early hearing detection and intervention program. Thematic qualitative analysis was performed on interview transcripts to identify common recurring themes in content. 40 parents/guardians participated in the study and consisted primarily of mothers. Demographic data revealed limited educational levels of the participants and 70 % had state-funded insurance coverage. Participants reported barriers in timely infant hearing healthcare that included poor communication of hearing screening results, difficulty in obtaining outpatient testing, inconsistencies in healthcare information from primary care providers, lack of local resources, insurance-related healthcare delays, and conflict with family and work responsibilities. Most participants expressed a great desire to obtain timely hearing healthcare for their children and expressed a willingness to use resources such as telemedicine to obtain that care. There are multiple barriers to timely rural infant hearing healthcare. Minimizing misinformation and improving access to care are priorities to prevent delayed diagnosis and treatment of hearing loss.

Late onset and progressive hearing loss is seen in children who develop hearing loss from cCMV. Frequent audiologic follow-up is necessary considering the natural history of cCMV hearing loss. Universal screening should be pursued due to the number of asymptomatic children, at birth, who develop late onset/delayed hearing loss. CI is an effective means of improving speech and language in this population.

Objectives To assess the efficacy of a patient navigator intervention to decrease non-adherence to obtain audiological testing following failed screening, compared to those receiving the standard of care. Methods Using a randomized controlled design, guardian-infant dyads, in which the infants had abnormal newborn hearing screening, were recruited within the first week after birth. All participants were referred for definitive audiological diagnostic testing. Dyads were randomized into a patient navigator study arm or standard of care arm. The primary outcome was the percentage of patients with follow-up non-adherence to obtain diagnostic testing. Secondary outcomes were parental knowledge of infant hearing testing recommendations and barriers in obtaining follow-up testing. Results Sixty-one dyads were enrolled in the study (patient navigator arm=27, standard of care arm=34). The percentage of participants non-adherent to diagnostic follow-up during the first 6 months after birth was significantly lower in the patient navigator arm compared with the standard of care arm (7.4% versus 38.2%) (p=0.005). The timing of initial follow-up was significantly lower in the navigator arm compared with the standard of care arm (67.9 days after birth versus 105.9 days, p=0.010). Patient navigation increased baseline knowledge regarding infant hearing loss diagnosis recommendations compared with the standard of care (p=0.004). Conclusions Patient navigation decreases non-adherence rates following abnormal infant hearing screening and improves knowledge of follow-up recommendations. This intervention has the potential to improve the timeliness of delivery of infant hearing healthcare and future research is needed to assess the cost and feasibility of larger scale implementation.