RESUMO
During the last 20 years, the number of infants evaluated for permanent hearing loss at birth has increased dramatically with universal newborn hearing screening and intervention (UNHSI) programs operating in all US states and many territories. One of the most urgent challenges of UNHSI programs involves loss to follow-up among families whose infants screen positive for hearing loss. We surveyed 55 state and territorial UNHSI programs and conducted site visits with 8 state programs to evaluate progress in reaching program goals and to identify barriers to successful follow-up. We conclude that programs have made great strides in screening infants for hearing loss, but barriers to linking families of infants who do not pass the screening to further follow-up remain. We identified 4 areas in which there were barriers to follow-up (lack of service-system capacity, lack of provider knowledge, challenges to families in obtaining services, and information gaps), as well as successful strategies used by some states to address barriers within each of these areas. We also identified 5 key areas for future program improvements: (1) improving data systems to support surveillance and follow-up activities; (2) ensuring that all infants have a medical home; (3) building capacity beyond identified providers; (4) developing family support services; and (5) promoting the importance of early detection.
