Children with Early Hearing Loss and Existing Comorbidity Conditions in New Jersey

December 3, 2007

PI: Deborah Spitalnik, PhD, The Elizabeth M. Boggs Center on Developmental Disabilities, UMDNJ-Robert Wood Johnson Medical School


"Children with Early Hearing Loss and Existing Comorbid Conditions in NJ" will utilize data from state surveillance systems, data from families and a survey of audiologists. The project is a partnership between the Boggs Center-University Center for Excellence in Developmental Disabilities and the NJ Department of Health and Senior Services, Early Identification and Monitoring Program. The project will (1) identify the prevalence of early hearing loss in children with existing comorbid conditions and who fail newborn/initial hearing screening; (2) identify the impact of existing comorbid conditions on follow-up of failed initial hearing screenings; (3) describe the experience and needs of families of children with early hearing loss and comorbid conditions; and (4) determine the knowledge and experience of audiologists in evaluating and providing services to children with early hearing loss and existing comorbid conditions. Children with comorbid conditions will be identified through the Special Child Health Services Registry utilizing the National Birth Defects Prevention Network list of reportable congenital conditions, mandated newborn screening diagnoses, and diagnoses and procedures from the Electronic Birth Certificate that are known predictors of hearing loss. Case matching by the Early Hearing Detection & Intervention Unit will identify children with these conditions and confirmed hearing loss or failed newborn hearing screening and potential hearing loss. Families will be surveyed by questionnaire with more intensive follow-up by interviews (phone/in-person) or focus groups. A Family Advisory Group will guide the project in a Participatory Action Research model with consultation from a community based family support organization to enhance cultural and economic diversity in participation. Audiologists will be surveyed to assess their understanding of children with hearing loss and comorbid conditions and to improve education and service delivery. Descriptive and inferential statistics will be utilized for data analysis. Relevance to public health: The study will provide information about infants and young children who have both early hearing loss and another disability or health condition and infants and young children who have a disability or health condition and potentially have a hearing loss but have not had hearing testing after failing their newborn hearing screening. The study will learn whether having another disability or condition makes it harder to follow-up hearing loss and the impact of more than one disability.