When a child with hearing loss needs a cochlear implant, parents naturally have questions. How well will they understand what I say? What can I do to help them succeed?
What if parents —and clinicians — could learn from hundreds of families who’ve faced the same journey?
They can, thanks to a database started decades ago and a team of Boys Town clinicians and researchers who saw its value.
Spanning 30 years and nearly 300 patients, the database became a one-of-a-kind resource.
“That’s a treasure chest for researchers,” said Ellen Peng, Ph.D., director of the Functional Hearing Laboratory at Boys Town National Research Hospital.
A landmark research study using the database uncovered key lessons, including the most important factor for helping children with cochlear implants develop skills to understand speech, and the risks they face for falling behind.
“This study is the first in the world using data of this length to show hearing outcomes of cochlear implants,” said Dr. Peng. “It's a great example of what we do at Boys Town with rigorous collaboration between clinic and research.”
Birth of a Database
Back in the early 2000s, a database was launched to collect data on cochlear implant patients during their routine audiology visits at Boys Town to verify how well they are hearing through the implant.
“The early idea was it could be used for research in the future,” said Jeffrey Simmons, Au.D., CCC-A, staff research audiologist and former manager of the Cochlear Implant Center at Boys Town Hospital.
Dr. Simmons recalls how new technology automated the process of entering data like speech test results.
Over the years, the amount of data quietly grew. Then, in 2023, Dr. Simmons was in Dr. Peng’s research lab explaining the depth of the database, which included speech perception data collected across 22 clinical tests that are tailored to assess how well a child understands speech as they grow.
Dr. Peng called it a Eureka moment.
“It’s a powerful dataset,” she said. “We get to see the trajectory of how these children develop the ability to understand speech over three decades.”
From Hunches to Hard Data
Boys Town researchers dove into the data, which included records from 1992 to 2024 in the database, and continues to grow. The cochlear implant wasn’t approved for children by the FDA until 1990.
The resulting retrospective study yielded some surprising results.
For example, they found that children who consistently used their cochlear implant have a better chance to catch up in the ability to understand speech — even if they got their implant a bit later.
“We know the key to good speech outcomes is early cochlear implantation, preferably before 18 months old. Lots of families received cochlear implants later because of various reasons and often have regrets and wonder if they should have acted on it sooner,” Dr. Peng said.
“It turns out that when the child receives a cochlear implant isn’t the whole story. If you’re using the device consistently, there’s hope to catch up sooner. On the other hand, inconsistent implant use—less than six hours per day—can delay a child’s ability to understand speech by three years,” she said.
Other results helped identify risk factors.
The study showed that children with certain diagnoses or other health concerns such as vestibular dysfunctions are at higher risk of delays in developing speech understanding.
“We also discovered a persistent gap based on a family’s socioeconomic background. This is alarming because children from low-income families are always delayed and never catch up with their peers even into adulthood,” Dr. Peng said.
Key takeaways from the study include:
- It’s still important to get the cochlear implant as early as recommended. “That’s indisputable,” Dr. Peng said.
- Consistent device use may be the most important factor for staying on track or catching up in their ability to understand speech, which will influence language, literacy and social development. “The saying is ‘eyes open, ears on,’” Dr. Peng said. “That’s a factor the family can control and should champion.”
- A good assessment of what’s causing the hearing loss and other comorbidities such as vestibular function is important.
- It’s critical to provide additional support for children in families from lower socioeconomic status to keep these children from falling — and staying — behind.
These findings give clinicians evidence to reinforce best practices and guide resources to where they are needed most.
“As clinicians, we had a hunch but no scientific or empirical data that family socioeconomic status has an impact,” Dr. Simmons said. “Now we have data to back that up.”
Results Reach the Clinic
Researchers and clinicians are already exploring ways to use the results in the clinic to educate families.
“We’re excited about the kinds of counseling tools and infographics we can use to talk to parents about the path of progress we should see,” Dr. Simmons said.
“We can say, for example, your child is learning and making the same progress as 80% of other children with a cochlear implant are,” Dr. Peng said. “We can talk about realistic expectations of outcomes.”
Making the data easier for families to understand goes a long way for parents who are making decisions for their child, including how soon to get a cochlear implant.
“It can feel like a big deal to make a decision about surgery, and it is,” said Jacquelyn Baudhuin, Au.D., CCC-A, senior audiologist in Boy Town’s Center for Childhood Deafness, Language and Learning. “So this is going to be really helpful for counseling families.”
Big Data, Big Team
More than a dozen Boys Town researchers and audiologists were involved in the study’s published paper and the work behind the scenes.
The first author on the study, Chieh Kao, Au.D., Ph.D., was a doctor of audiology student from the University of Minnesota doing research for the last year of her externship in Dr. Peng’s lab at Boys Town Hospital. Her work launched the study.
Baudhuin worked with Dr. Kao on developing the scale to score the speech testing data. “We use many clinical speech tests to assess different levels of speech understanding abilities as a child grows. It’s important to have a system that can track growth over time to understand the developmental trajectories of this large number of children with cochlear implants,” she said.
Experts from across multiple specialties worked to organize, understand and learn from the data. None of it would be possible without the clinical staff who collected and maintained the data over decades, creating a resource unlike any other.
“They've been doing this every day for 20-plus years. They are the heroes behind this dataset,” Dr. Peng said. “It’s just very unusual to have a clinical dataset over this many years or of this size.”
A single goal brings all the experts together: helping the children and families who come to Boys Town for answers and support.
“Our research and clinical teams address real-world problems at Boys Town,” said Dr. Peng. “It all goes back to helping improve care for our patients.”