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. Pediatrics 2010;126:S19-S27

We studied eight persons whose karyotypes demonstrated deletion of a portion of the long arm of chromosome 18. Seven of these persons who showed the typical del(18q) syndrome had a common deletion in band 18q21, most likely band q21.3, and in at least two persons the deletion was interstitial. Another mentally retarded child, dissimilar in appearance, had a more proximal deletion within band 18q12. Two different clinical syndromes resulted from deletions of these different segments of the long arm of chromosome 18.

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OBJECTIVES. The purpose of this study was to identify what stakeholders considered best practices for parent-provider communication regarding newborn hearing screening and diagnosis. We used consensus data to develop educational materials for parents.METHODS. We conducted 29 focus groups and 23 individual interviews between October 2003 and May 2004. Participants included (1) English-and Spanishspeaking parents of infants Ͻ18 months of age who had experience with hospitalbased newborn hearing screening; (2) parents of children with hearing loss; (3) primary care providers who provide prenatal care or care for newborns; and (4) audiologists, audiology technicians, and hospital nurses.RESULTS. Communication to parents about hospital-based newborn hearing screening was limited. Most parents first learned about the screening in the hospital, but all stakeholders thought a more opportune time for education was before the birth. For parents of infants who did not pass the newborn hearing screening, stakeholders recommended direct communication about the urgency of diagnostic testing. They also indicated that primary care providers needed current information regarding hearing screening, diagnostic testing, and early intervention. All stakeholders thought that a brief brochure for parents to take home would be helpful for hospital-based screening and, if necessary, subsequent diagnostic testing. Primary care providers requested basic, to-the-point information.CONCLUSIONS. The most opportune time to begin discussion of newborn hearing screening is before the birth. Providers need up-to-date information on current standards of hearing screening, diagnosis, and intervention. User-friendly patient education materials, such as those we developed, could assist providers in educating parents. T HE JOINT COMMITTEE on Infant Hearing and the American Academy of Pediatrics (AAP) recommend that all infants be screened for hearing loss in the newborn period and that hearing loss, if present, be diagnosed by 3 months of age. If hearing loss is present, then the infant should be enrolled in treatment by 6 months of age. 1,2 Early identification and intervention are critical for successful speech and language development. 3-5 Unfortunately, many infants who do not pass the hospitalbased hearing screening do not receive timely appropriate follow-up care. 6 Large numbers are lost to follow-up care after abnormal newborn hearing screening test results. To ensure optimal outcomes for infants, it is particularly important for parents to receive information about hearing screening and to understand the benefits of early diagnosis and intervention.The AAP recommends that information about newborn hearing screening and the results of screening be given to parents and primary health care providers in a timely sensitive manner. 2 The Joint Committee on Infant Hearing advises early hearing detection and intervention (EHDI) programs to develop family information materials that are accessible and written in English and other appropriate lan...

Although ϳ95% of US newborns are now screened for hearing loss at birth, more than half of those who do not pass the screen lack a documented diagnosis. In an effort to improve the quality of the follow-up process, teams from 8 states participated in a breakthroughseries learning collaborative. Teams were trained in the Model for Improvement, a quality-improvement approach that entails setting clear aims, tracking results, identifying proven or promising change strategies, and the use of small-scale, rapid-cycle plan-do-study-act tests of these changes. Parents acted as equal partners with professionals in guiding system improvement. Teams identified promising change strategies including ensuring the correct identification of the primary care provider before discharge from the birthing hospital; obtaining a second contact number for each family before discharge; "scripting" the message given to families when an infant does not pass the initial screening test; and using a "roadmap for families" as a joint communication tool between parents and professionals to demonstrate each family's location on the "diagnostic journey." A learningcollaborative approach to quality improvement can be applied at a state-system level. Participants reported that the collaborative experience allowed them to move beyond a focus on improving their own service to improving connections between services and viewing themselves as part of a larger system of care. Ongoing quality-improvement efforts will require refinement of measures used to assess improvement, development of valid indicators of system performance, and an active role for families at all levels of system improvement. Pediatrics