Making Sustainable Improvements in Hearing Screening
Wisconsin’s Early Hearing Detection and Intervention Program Director Elizabeth Seeliger, AuD, shares her success story
February 19, 2013
|Elizabeth Seeliger, AuD
Children with hearing loss need to be identified as early as possible so they don’t fall behind in developmental progress. To help children get the services they need, state Early Hearing Detection and Intervention (EHDI) programs aim to streamline care and assist families. But many EHDI programs struggle to find babies who fail a hearing screening and miss their follow-up appointment. These families may become lost in the system.
In a series of NICHQ projects, 53 US states and territories learned quality improvement techniques for addressing obstacles in hearing screening and follow-up. By working in teams of EHDI coordinators, audiologists, parents and other partners, these states have made impressive progress streamlining hospital, audiology and early intervention services to better catch families who fall through the cracks.
As a doctor of audiology and the director of the Wisconsin EHDI program, Elizabeth Seeliger, AuD, found that her state used to struggle with how to make improvements to a system that seemed too vast and messy to even begin to know where to start. But after being part of NICHQ’s first hearing screening improvement project six years ago, Seeliger has become a devoted quality improvement advocate, and now serves on NICHQ’s faculty staff for the current program, called Improving Hearing Screening and Intervention Systems (IHSIS). NICHQ’s Communication Specialist Kristina Grifantini caught Seeliger for a few words during the last IHSIS in-person session.
Why is hearing screening so important?
Prior to the implementation of universal newborn hearing screening in the US, most children were not identified with hearing loss until approximately two years of age when they started to miss major developmental milestones. Even severe to profound hearing loss was often missed. Hearing loss is an invisible condition and can be hard for parents to identify because children will react to social and environmental clues and respond as if they can hear; for example, a toddler might go to the front door when he sees his mom grab her car keys instead of responding to her auditory message “time to go bye-bye.” If children are not identified until after a year of life, they’ve often missed some critical windows for speech and language — as well as social and emotional — learning and it becomes harder and harder for them to catch up, sometimes even impossible. We know this to be true. However, research shows if they’re identified before six months of age they can develop at the same rate as their typical hearing peers and avoid later struggles associated with late diagnosis.
How does hearing screening currently work in the US?
Initially the baby will be screened at birth, usually in a hospital setting. If the baby doesn’t pass that first screening, a family will be referred for either a second screening or for a diagnostic evaluation by an audiologist. After an audiologist has confirmed a child has hearing loss, the child is often referred to early intervention (EI) services. National recommendations say that screening should happen by one month of age so that the auditory diagnostic evaluation can happen by three months of age; all of this is so that if a child does have permanent hearing loss he or she can be enrolled in high-quality EI services before six months.
What are the biggest obstacles for getting children to EI services before that six-month mark?
A major barrier is helping families to understand the impact that identifying hearing loss early can have on their children’s outcomes. Right now each state has its own system of screening and each hospital has its own process for sharing that information with families, so standardizing the message that families get is a challenge. We’ve tested a variety of change strategies to make sure families are getting information about the importance of follow-up both verbally and in writing in their primary language, whenever possible.
A second obstacle is getting healthcare providers to also understand the importance of immediate follow-up. Staff in OBY-GYN units are used to giving families supportive information; as a result, nurses tend to say, “your baby didn’t pass the hearing screening but it’s no big deal, it’s probably just fluid, or sometimes our equipment is a little finicky.” We do know that for a percentage of babies who go to the next step of diagnostic evaluation, it was simply fluid in the ears. But for the families whose babies do have hearing loss, the message from nurses can influence them not to come back for that follow-up appointment. Once they miss that first diagnostic appointment our ability to get those families back in is delayed and sometimes doesn’t happen, so conveying the message in a sensitive but impactful way is important. There’s a lot of people in this system, and it only takes one person to say “your baby is probably just fine” to give a really overwhelmed new mom an excuse not to go into that diagnostic appointment, especially if it’s an hour or more away.
Finally, accessing to pediatric audiologists who are highly experienced working with babies, not just young children, can be a challenge depending on where you live, especially if it’s in a rural setting. We need our local community audiologists to be willing to do that hearing testing, but there are a lot of barriers, such as getting reimbursement and training.
How has NICHQ’s IHSIS program addressed some of those barriers?
NICHQ provides the quality improvement model, which teaches participants how to collect data and test small cycles of change to create sustainable, positive change.
Before we started the quality improvement work, providers would tell parents that their baby didn’t pass the hearing screening and they should make a follow-up appointment, so the onus was on the parents. When we shifted that responsibility from the family to the discharge planners at the hospital level a couple of things happened. The family had a better understanding of what to do next and where to go; leaving the hospital with a plan in place made it easier for them to follow up. The other thing that happened was that parents perceived the follow-up appointment as important because someone was taking the time to make it for them and talk to them about it. We saw a decrease in no-show appointments which resulted in a decrease in the age at which that final screening occurred. We began to consistently get children in for the final screening before one month of age.
We also now require hospitals in our state to input certain data fields like family’s primary language, two points of contact and the primary care physician into our web-based data collection and surveillance system. Hospitals are then responsible for calling the family to reschedule that appointment if the family’s a no-show. Our EHDI program is the safety net. If there’s no success in rescheduling, we’ll step in and see how we can provide support to the family to get them to that next appointment.
How have parent partnerships been helpful in the improvement process?
Parent partners are invaluable because they are the best judges of whether a change is an improvement. Without family partners at the table, we can’t know if we’re doing a good job. One of the more powerful things we did was to have parents do a walkthrough of their local EHDI system and give feedback to the providers about what was good and what was not working very well, like receptionist interaction, parking, and how expectations about the appointment matched up to what actually happened. And it shifted the professionals on the team to see the value of having their consumers making recommendations for improvements and bought into the success of their system.
That shift has continued to be a change at the local level—now our hearing screening partners would never consider creating or changing a procedure without having one or several parents look at it first.
How has learning about quality improvement affected your work?
It has been a career-changing and life-altering experience in many ways. Quality improvement methodology is not additive to my work — it influences how I do my daily work.
Prior to the working with NICHQ, we had had some broad areas of focus for our plan for the year, but really had no strategy or mechanism for testing whether a change that we implemented was an improvement. We’d often implement statewide before knowing if the change was beneficial. Before, when doing outreach to at-risk communities of practice, we’d inform people that they weren’t meeting benchmarks and we expected them to do something about it. Or we’d focus on one piece of EHDI continuum, ignoring upstream issues.
Now, we bring the improvement model with us whenever we have conversations about making a change in a community system. We talk in terms of small tests. The level of resistance to change has totally dissipated because in my back pocket I have this phrase: “what if we just try a change with two families?” Providers have a really hard time saying no to that. Then they have that same experience by being empowered by the data that comes back because there’s no such thing as a failed test of change if we learn something. Now I’m constantly thinking about the why’s behind the no’s. When someone tells me they can’t make a change — not enough time, not enough resources — I can preemptively address those concerns by saying let’s just take a look at it with a couple of families and see how it goes. I’ve seen other participants in NICHQ projects make a similar shift and now think about how things are possible instead of impossible.
The other thing NICHQ helped me do is get my extended partners in the same room. The impact of people from different professions — hospital nurses, pediatric audiologists, primary care physicians — just sitting at the table together was unbelievable. I don’t think you can underestimate the power of those partnerships in making sustainable change.