By Clarissa Donnelly-DeRoven
There’s a tried and true process for evaluating a child’s hearing: an audiologist sets them up in a soundproof booth, sits on the other side, and then, using a collection of expensive and immovable equipment, tests their ears. If the child shows signs of hearing loss, the audiologist refers them to an otolaryngologist — an ear, nose and throat doctor — for follow-up.
The only issue? Audiologists and ear doctors simply don’t exist in some rural areas. There are 696 audiologists in North Carolina, and just 122 of them have mailing addresses in rural counties, according to data from the North Carolina Board of Examiners for Speech-Language Pathologists and Audiologists. Among the state’s 78 rural counties, 36 have no audiologist, and 11 rural counties have just one.
The pattern repeats for ENT doctors. Of the 307 licensed ENTs in North Carolina, just 98 of those doctors practice in rural counties, according to data from the N.C. Medical Board. In total, 50 counties in North Carolina don’t have a single ENT — 49 of those counties are rural.
Without access to hearing care, a child’s entire life can be impacted. A new study, called the Appalachian STAR trial, thinks it has an answer for how to help more rural children access hearing doctors.
Swap the expensive audiology gear for an app
The trial, which received $5.5 million in funding from the National Institutes of Health at the end of September, will use telehealth to expand access to hearing screenings in 14 rural Kentucky schools and to streamline a child’s initial follow-up appointment with a specialist.
Duke University ENT and professor Susan Emmett is the co-leader of the trial, along with researchers from the University of Kentucky. Emmett thinks a lot about preventative medicine, and how to improve access to those services.
“Most of my work focuses on hearing loss because of the lifelong impact, particularly of childhood hearing loss,” she said. “The World Health Organization estimates that 60 percent of all childhood hearing loss can be prevented.
“In most of the world, children don’t have good access to hearing care and this affects their entire lives. It produces speech and language delays, it makes kids do worse in school, and reduces their job opportunities as adults and yet it can be completely prevented.
“Our goal in partnering with Kentucky schools was that by working in an area that is extremely disadvantaged — some of the poorest counties in America, where access to care is just not where we want it to be — we could build a model that’s generalizable for all of rural America,” Emmett said.
It all starts using a phone-based screening tool, which can be administered by anyone, not just a trained audiologist.
“A typical kindergartner would undergo a school hearing screening with their teacher or with the school nurse,” Emmett explained. If the screening determines that the child may be experiencing hearing loss, whoever is administering the test takes a photo of the child’s eardrums using the app. All the information is sent off in a telehealth message to a Kentucky-based audiologist, who will consider some different possibilities.
“Does the child need to come in for an in-person visit with an audiologist?” Emmett said. “Do they have an ear infection and need to go see their pediatrician or their primary care provider? Or do they have a problem that requires surgery, and do they need to go see an otolaryngologist?”
Once the audiologist determines the next steps, they send the information back to the school and to the child’s parents in that same telehealth email. The goal is to make sure that once a problem is identified, each child is not only referred to a specialist, but actually connected to the health care system.
From Alaska to Kentucky
The groundwork for the trial comes from work Emmett and others conducted in 15 schools in rural northwest Alaska, where “the burden of infection-related hearing loss — this is all preventable hearing loss — is extremely high,” Emmett said.
She described the trial in Alaska as providing “the initial proof of concept” for the idea that expanding school-based telehealth screenings could improve access to specialty care for rural children.
While the trials in Alaska provided evidence for their theory, the Kentucky-based research will face two critical differences: nearly every participant in the Alaska trial was covered by the tribal health care system. In Kentucky, the researchers will have to contend with multiple insurance companies, along with Medicaid.
Also, Alaska already has well-established telehealth systems.
“In rural Alaska the geographic barriers to care are so immense that they have used telehealth for the last 20 years to provide care,” Emmett explained. “And so we used the infrastructure that was already in place.”
Generally, a lack of broadband access in rural areas poses a challenge for expanding telemedicine. But for this particular intervention, spotty broadband isn’t expected to be a major hurdle since most of the care occurs over email, rather than a live video call.
Future school-based telehealth interventions in North Carolina may soon be able to rely more on high-speed broadband, thanks to recent grants awarded by the U.S. Department of Agriculture. On Oct. 22, Pitt, Johnston and Columbus counties collectively received $1.8 million to upgrade and expand their telemedicine and distance learning infrastructure.
Bridging the gap
“What we learned in Alaska, and this is true all over the world, is that even if children are identified at the school level, more often than not they’re lost to follow-up,” Emmett said. There’s a whole range of reasons why families might not follow up on a referral: a lack of insurance coverage, high deductibles, uncertainty navigating specialty care services and more.
What Emmett and other researchers learned is that once the initial connection is made between family and specialty provider, children “generally do receive what they need.”
“The problem is that initial step of getting from identification in the school, to being connected to health care,” Emmett said, “That’s really where the breakdown happens.”
Though the actual trial in Kentucky schools won’t begin for about two years, Emmett said the team is working on “refining” the intervention model to ensure it works for this community. They’re particularly focused on the most effective way to connect the specialist and the family. They’ll also spend time meeting with Kentucky officials, including the governor, the education commissioner, and the health secretary, superintendents from every school where the trial will take place, and local leaders.
“This project will build that initial evidence that’s necessary to then expand this work across rural America,” Emmett said. “Our goal is to transform access to care for rural children across the U.S.”
Clarification: This story initially stated the trial received $1.8 million in funding from the National Institutes of Health. The trial received $5.5 million in funding.