Hearing loss is one of the most prevalent congenital disorders, with approximately one in 500 newborns in the United States diagnosed with varying degrees of hearing loss each year. With an eye toward helping children and their families manage the challenges involved with the diagnosis and timely intervention, the Duke Division of Head and Neck Surgery & Communication Sciences has implemented a new model for delivery of pediatric cochlear implant (CI) services.
"Our program extends beyond the walls of Duke and out into the communities where children live and learn to communicate,” says Howard Francis, MD, an ear surgeon and chief of the Division of Head and Neck Surgery & Communication Sciences. “We feel that it is important to make the Duke experience as user-friendly and supportive as possible in light of the challenges these families face.”
To develop the program, Francis and a multidisciplinary team of Duke otolaryngologists, audiologists, and speech and language pathologists collaborated with community organizations, private practitioners, and a national consultant to develop the program. While similar to the initiative he led at Johns Hopkins Hospital, this program features greater emphasis on community partnership. Three guiding principles form the basis of the Duke program, he says:
1. Close collaboration with community-based providers.
Duke providers collaborate with providers in patients’ local communities so that families don’t have to travel to Duke for every aspect of their child’s care. Duke providers remain involved with the patient and help ensure that high-quality care is continued.
2. Family-centric approach.
This principle recognizes the intense emotional and logistical challenges that accompany a diagnosis of hearing loss, particularly in a newborn. “Families address these challenges in different ways,” says Francis. “Some families embrace them and do everything they can to get the proper care for their child, and others shut down and don’t seek the care they need in the proper timeframes.” Because outcomes vary widely depending on these family dynamics and the timing of intervention, Duke specialists are building relationships with state and local agencies, and individuals who play a part in the child’s life, such as teachers, to create a network of support for families.
3. Integrated continuum of care.
Some children have mild to moderate hearing loss and can overcome their hearing deficit with the use of hearing aids. Others have such large deficits or distorted hearing that the aids are unable to help them learn how to listen and speak. In that instance, the CI may be the right answer. “A CI program needs to be part of a larger identification and intervention program for children, and it shouldn’t stand alone,” Francis explains. “Ours is more broadly based and integrated with community services than most others.”
Francis notes that Duke’s highly trained surgeons, audiologists, and speech and language pathologists are involved at the national level in establishing criteria for CI, and are committed to early identification and intervention. If hearing loss can be mitigated with an aid or CI early enough in their development, a child can acquire spoken language normally, he says. This has educational and vocational benefits for the child due to improved literacy associated with better listening and spoken language.
Duke’s program also provides continuing support as children start school to ensure their needs are being met. For example, a child who receives hearing aids may seem to be doing well in preschool but, over time, it may become increasingly clear that the aids are not meeting their needs, either in language development or education. At the same time technology is improving and indications for cochlear implantation are evolving. The team is committed to continuously evaluating opportunities for improved communication and education benefit with new technology.
“Assuming that medical criteria are met, we’re commonly performing CI for children before one year of age,” he says. “But then we remain involved in their development as a team and as a Duke-Family-Community partnership—we don’t just perform the CI and wish them well. Whether they receive hearing aids or CI, whether we fully restore or modestly improve their hearing, there’s still the work of enriching their language learning in partnership with family and community providers.”