The Unexplained Hearing Concerns of Adults with Normal Audiograms

Speaker 1: Hello, and welcome to another episode of This Week in Hearing. I’m your host this week, Brian Taylor, and our topic is the experiences of people with unexplained hearing concerns, and usually those that have normal audiograms. And with us to discuss this topic, as well as some of their recently And a really, I think, interesting and recently published paper is Erin Kamerer and Brittan Barker, who are both on the faculty at Utah State University. So Erin and Britton, I wanna welcome you both to This Week in Hearing.

Speaker 2: Thanks, Brian.

Speaker 1: It’s great to have you both with us. Thank you for taking time out of your busy schedule. And before we get started the topic at hand I’d like you both to tell us a little bit about your background what got you interested in audiology and the academic side of audiology, and what got you interested in this topic. So maybe Brittan, you can go first.

Speaker 2: Sure. So, my background and academic training all basically took place at the University of Iowa, but the interesting thing to note is it spans a number of different fields that overlap in much of the work that I do now. It spans fields of psychology and cognitive science language development, and audiology, while my publication record most prominently reflects these consistent contributions to the field of pediatric cochlear implantation for about nearly 40 years now. And the reason that I got into audiology is I had started off in cognitive science and cognitive hearing science, and particularly, I was really interested in speech perception, working memory, and infant listeners. And what had happened to me as a grad student pursuing my PhD, I distinctly remember an experience I had working on a research study with a family and their baby, talking with the mom. She was incredibly excited, and as I walked them out to their car, thanked them for their help, I felt a little sad realizing that the information I had learned and what we were teaching her very likely was gonna be locked behind a paywall later on in the future, and she and other moms wouldn’t be able to access it. And in undergrad, I had been interested in communication sciences and disorders, and so at that point in time, before I finished, or started, my dissertation in cognitive science, I flipped over to pursue a PhD in speech and hearing sciences, with an emphasis in audiology. And I chose audiology in particular because I loved the integration between neurology, cognition, and language, all through this filter of the hearing system, and how, when it was working well, people would thrive, and when it was disrupted, people would have a lot of trouble from communication to daily living, et cetera. And so really, that kind of brings me to how I got interested in this work. Since coming to USU about 10 years ago, my work has really expanded to include narrative experiences of individuals affected by hearing loss, and using that information and knowledge to inform and improve person and family-centered healthcare. And that’s how I got interested in working with Erin and these patients with unexplained hearing concerns. As we’re gonna talk about today, these people have really remarkable daily experiences that can be quite challenging and really overwhelming for them, yet their reported experiences seem to often be overlooked or dismissed by clinical care providers. So for me, this presented an interesting scientific question and problem, but also a really important problem that needed solutions when it comes to providing clinical care.

Speaker 1: And more on that in a bit. Aryn?

Speaker 2: Yeah.

Speaker 1: … tell us about your story.

Speaker 3: Yeah. I started… I’ve always been really interested in music and hearing growing up. So I started graduate school going into the clinical side of audiology but quickly realized that my strengths did not lie in face-to-face patient care that I was much better off behind the scenes in research. And so I actually… so I was at University of Kansas, and I actually dove straight into animal physiology work, so that’s where it all started with the goal to really develop more sensitive tests of cochlear and neural pathologies because the tests that we have now just really don’t cut it. So for example, we really don’t have any tests for inner hair cell loss. we can’t tell if someone has inner hair cell damage, and this is really important, because they are the primary sensory cell for hearing and if inner hair cells are damaged a hearing aid can really do very little to help a patient. So my work for a, a decade was really behind the scenes trying to figure out you know, pathologies, underlying hearing difficulties, and developing better hearing tests. And then I worked at Boys Town Research Hospital in Omaha, and that’s where I really began interacting more with the humans suffering from these difficulties which made me realize that there is a, a whole person attached to the ear and and then I moved to Utah State where I met Brittan and we really started this perfect collaboration, because she had, had just so much more experience-… thinking about person-centered care and and thinking about the whole person. And I had really just thought more about these underlying pathologies, and what’s going on, what, what could be happening in the person’s ear. And, and so, you know, we just really … This is where we really got together and it’s like, how can we really put these two things together and put our two expertise, like, our expertise together to really think about how we can help how we can do research to help this patient population?

Speaker 1: Yeah. It sounds like you both bring something unique to the table, which I think is great when it comes to collaborative research. So let’s kind of dive into the, into the topic here at hand, and start, I’ll start by asking you tell us a little bit more about adults that have normal audiograms and they come into the clinic and they might express concerns about their hearing or communication ability. You know, this is kind of a hot topic in the field, and I’m kind of wondering if we could maybe refresh our memories. How common is that condition, normal audios with self-reported hearing concerns? And what are some of the labels that you hear out there that we use to describe this condition?

Speaker 3: Yes. So about up to 10% of people who seek help for hearing concerns will have audiograms within normal limits and no explanations for their hearing difficulties. And any time I talk about this, clinicians will come up to me and tell me that this is really common in their clinic. The labeling gets really hard and somewhat controversial. Some people will call it … Like, an older term for it is King-Kopetzky syndrome. This originally implied some sort of a psychogenic cause, so that can sometimes be a little controversial. It’s also gone by obscure auditory dysfunction. Some people call it undiagnosed acquired auditory processing disorder, or APD but APD is also just, like, a huge umbrella diagnosis that that doesn’t really locate the problem. So issues with processing could be caused, by, pathologies anywhere from the cochlea to the auditory cortex, or even to its integration with other systems like managing attention. So we … Even with a, with a diagnosis like APD, that doesn’t really tell us much about where the problem is or where the breakdown is or how to help that problem. Some people call it hidden hearing loss which, again, still may be problematic because that specific term was originally coined to mean or age-related cochlear synaptopathy which we cannot know is or is not causing this in these people who are, are saying that they have hearing concerns but have normal audiograms. So the labeling can be really difficult, which is why in this particular paper, we just called it, you know, unexplainable hearing concerns with a normal audiogram.

Speaker 1: Yeah, the, the problem is real, whatever you call it, so.

Speaker 3: Yeah.

Speaker 1: Britton, I don’t … Did you have anything that you wanted to add?

Speaker 2: No. I, I think, I think Aryn addressed it beautifully. I think one of the big dilemmas that she was talking about is we don’t have clear, objective ways to assess and diagnose site of lesion, which adds to a lot of complications when figuring out diagnoses and labels.

Speaker 1: Right. And by the way there’ll be a link to your paper, which is in the International Journal of Audiology. There’ll be a link in the in the show notes. So, forgot to mention that earlier, but and maybe Brittan we’ll stick with you on this line of questioning,

Speaker 2: Yeah.

Speaker 1: ’cause you’ve already kind of alluded to it. But in in, in the paper, in the IJA paper you mentioned this term clinical conundrum.

Speaker 2: Yeah.

Speaker 1: I I’ve already alluded to it a little bit. Could you … But could you go, maybe go into a little bit more detail to describe what you mean by that?

Speaker 2: Yeah. Of course. In fact, we we look at this from two sides, I was gonna say of the same coin. It’s so cliche, but it’s also true. We look this from two perspectives. The clinical conundrum presents itself when we’re talking about the clinician, and a clinical conundrum presents itself when we’re talking about the situation from the patient’s and family’s perspective. Ayrn, let You wanna do this? I’ll talk about the patient/family perspective, and you can take the side of the conundrum in

Speaker 3: Yeah.

Speaker 2: to Actually, how about if you go ahead and start with the clinical side, with the clinician. Then I’ll follow up and build on what you’re sharing about the clinician.

Speaker 3: Yeah. That sounds great, that sounds great.

Speaker 2: Okay.

Speaker 3: the … I think the … It kinda starts with that, like, we’re… the way we’re training our AuD students. So we are teaching our audiology students to adhere to a clinical protocol that’s overseen by our professional organization. So like here in the United States, we have the American Speech-Language-Hearing Association that advocates for clinicians to perform otoscopy, immittance, pure tone audiometry, and speech audiometry. And we teach our, our audiology students that they should adhere to this protocol, because these are set out by professional guidelines that have been researched. And so clinicians are following these guidelines, and then mostly stopping at this point and saying, “Well, I’m not seeing anything per this protocol, therefore there must not be anything.” And regrettably, this protocol is really not accommodating this particular patient because primarily the concern of this patient is difficulty understanding speech in the presence of background noise, so difficulty understanding their friends and family in social situations like restaurants and busy spaces. So we really need things like speech and noise testing or processing tests maybe physiological tests, and maybe even those tests that we have available to us aren’t even going to cut it. So it presents a problem for clinicians, like that the guidelines that we have available are not catering to this particular patient and so it leaves the clinician without professional guidance as to how to diagnose … how to go about diagnosing this patient, and then less professional guidance as to go about treatment options or referral options for this patient. And then I’ll hand it to

Speaker 2: Yeah.

Speaker 3: to over here .

Speaker 2: Yeah. Thanks, Erin. That was good, good tag team setup. So what happens now, right, quite often, the clinician will walk away. As I’m sometimes excitedly we’ll talk about, and, and not from an ugly or malicious perspective, but from a perspective of they’ve done their job, they followed the protocol, and they’re very excited to share with the patient, “There’s nothing clinically wrong with you. You’re okay.” But this brings us to the other side of The Clinical Conundrum which is the patient, and the patient is feeling and reporting and knowing that they are not okay. So the patient side of The Clinical Conundrum is also related to the fact that they’re having these daily listening challenges that can’t be explained, but because they can’t be explained by these standardized clinical diagnosis and diagnostic protocol, there’s this underlying thread that’s missing from the clinician. When the clinician is almost celebrating, what’s happening to our patients is they’re having a very different personal experience. When they are told, “Hey, you have normal hearing,” and the clinician moves on to the next patient in their caseload, the patient walks away with lots of regret, because I think sometimes we forget how important a diagnosis can be. When we’re looking through a filter of illness and health, oftentimes a diagnosis feels really sad, right, especially in our culture. You are not healthy. I’m sorry. You have this challenge to face. But the catch is diagnoses frame reality and, and change the narratives of our lives in really remarkable ways that not only, yes, can be really negative and burdensome, but the fact of the matter is, especially for people like this with unexplained hearing loss, a diagnosis is gonna legitimize their life experiences. So when they walk out of a clinic without a diagnosis, there’s no badge of honor, if you will, or there’s no way for this patient to make sense of what they’re going through, not to mention the fact they still can’t hear in these environments that are really important to them. So that’s our Clinical Conundrum. There’s a side that’s very clinician-centric, and then the other side of the conundrum is very patient-centric.

Speaker 1: Yeah. No, you both did an excellent job of explaining that, and I do think that, that both sides or two sides of the same coin is a

Speaker 3: Yeah.

Speaker 1: … a great way to describe it. Well, anyway, that’s, that’s great. That’s, that’s good introduction to what we’re gonna do next which is dive into into your research, into the paper. So could you tell us a little bit about the questions that you were trying… specifically related to this topic, the research questions that you were trying to address in your project?

Speaker 3: Yeah. So so far in, in … as far as we knew no one in the US had ever asked this patient population to talk about their personal experiences with their hearing healthcare providers. So we wanted to know what kinds of stories patients with unexplained hearing concerns tell tell about their experiences seeking hearing healthcare in the United States, and that was our research question for this study.

Speaker 1: Okay. So let’s get into what you actually did. What were the research methods? How did you approach trying to answer this question?

Speaker 2: Yeah. So what we did was we approached this through a qualitative semi-structured narrative approach. We recruted-… recruited 15 people from across the US who reported … we officially … This is how we recruited people: “Do you have a complaint of hearing difficulty, but when you’ve been formally tested or had your hearing formally tested, the results appear normal?”… those people self-identified, and we verified that they were eligible and willing to participate, and then we conducted semi-structured interviews with these adults via Zoom. And during these interviews, we asked them to share the story of when they went to get their hearing tested, and then we followed up with various clarifying questions about those stories and their experiences. After data collection was complete, those stories were transcribed by enthusiastic undergrad and graduate researchers in our lab, de-identified, and then our research team conducted thematic analysis in the spirit of the scientists Braun and Clark, and were looking for themes that might have come out of these stories and experiences from these patients with these unexplained hearing difficulties.

Speaker 1: Yep. So tell us more. What did you find?

Speaker 2: Yeah.

Speaker 3: Yes. So across the patient interviews, we found three salient themes. The first and strongest across the patients we interviewed was dismissive healthcare providers. So, there were a couple examples of overtly dismissive behaviors described by patients. So for ample, one participant noted after one provider that she sought help from told her that her hearing test results were all within normal limits and she continued to complain about her hearing difficulties the provider rolled her eyes at her. So, this was an extreme example of dismissive behavior and really unfortunate. But most of the participants described kind of a more insidious type of dismissal where their providers were like Oh, good news. You have normal hearing after all.” And this is what Brittan was talking about where providers saw this as, “Oh, this is really great news. You don’t have hearing loss.” But there’s this mismatch, like where the people are there because they see that they have a problem and they’re there to seek help. So when you’re seeking help for a real concern and someone says, “Oh, good news. You don’t have a you, there’s no, there’s nothing to be concerned about,” it actually comes across as dismissive to that patient. So the second theme was a misalignment between the patient’s concerns and the tests that were performed. And we thought that this was really interesting, because we did not ask these participants to recall the test battery. But many participants made a point to say that listening to the beeps or single words in a quiet room was not their primary concern. So when the doctor said, “Well, nothing seems to be wrong,” they were upset that the doctor did not actually test their primary concern, which was speech and noise. A couple participants did note that their doctor gave them a hard speech and noise test, but it was, I think, just like two maybe out of the 15 participants. And so several participants really noted that they were upset that their doctor did not actually test their primary concern, and then they said, “Well, nothing’s wrong with you,” and they’re like, “Well, you didn’t actually test what I came in here saying I was having trouble with.” And then the third theme was doctor shopping. So most of our participants engaged in doctor shopping behaviors, so that’s when they sought help from multiple providers, and they usually sought help from multiple types of providers, so that included audiologists primary care physicians ENTs, neurologists, and neurotologists. And some of our patients noted that they were actually referred back and forth from these providers. So their audiologists were referring them to their primary care physicians or to ENTs and maybe back and forth several times from these providers because nobody was finding anything and this really didn’t amount to anything. And we found that these themes saturated by interview number four. So that means that these three themes emerged by the fourth participant and no new themes emerged after that. So these three themes were really quite strong across the sample of participants that we interviewed.

Speaker 1: Yeah, that’s really interesting. I wanted to dig at that a little bit more and talk, get your, your feedback, your, your take on how clinicians can apply the findings around these three themes. What does it mean to somebody that’s in clinical practice? How can they use your findings to do a better job with their patients, basically?

Speaker 2: Yeah. I mean, I think myself personally and Erin, I know, we believe that… … there’s lots that can be learned from our findings in a number of different ways. But I also recognize that some of these solutions are big things, like overhauling what are our recommended protocols in clinic. So when we talk about ways to apply these in a manner that might be less overwhelming, or even confusing if some of these ideas are new to you, that we’ve talked about today, I think as a starting point, there, there are two really, there are two main ways that clinicians can begin to leverage the information that we gathered here. Frankly, I think the first one is eliciting and listening to and trusting what the patients are telling you. Make time to hear the stories and learn about these parents’… these patients’ narratives and their experiences, and trust what they’re telling you are their experiences. As a clinician, when you make time for the patients to share their stories during clinical visits, research shows over and over again in other fields of healthcare, that it will allow for these, this opportunity for the core concepts of person-centered care, dignity, respect, information sharing, participation, and collaboration between the patient, family, and care provider. When you make time and room for those stories, these core concepts are gonna naturally start to drive hearing healthcare and, and drive the experience. And what we know from person-centered care research is when person-centered care is at the forefront of any healthcare, but also hearing healthcare, this results in happier and more satisfied patients, but it also results in more happier and satisfied clinicians. So that’s my first recommendation. Take time to listen to and trust these stories and experiences from your patients when they come into the clinic. Second, as a clinician, this takes a little more retraining and a little more thoughtfulness during your clinical care provision. Don’t leave your critical thinking behind when you enter the sound booth. So many of us, when we’ve done this for decades, we have habits. We have habits that fit our daily schedule, we have habits that fit the equipment that we happen to have in our clinic, or habits that have been developed because they’re required from higher up entities like the hospital, et cetera. But I encourage clinicians to start to look behind these preferred practice patterns and habits, and especially looking behind these standardized protocols that are recommended by our governing bodies, especially when we’re engaging in assessment. And instead, or in addition to, start to really think about and center the assessment on the patient’s concerns. So for example, like Erin was alluding to in one of our themes, if a patient is reporting trouble listening in these complex, noisy situations, our data suggests that if indeed the clinician pauses during the audiological assessment and includes a formal assessment of their ability to, say, listen to complex noise and… complex sentences and noise, say adding something like the QuickSIN, this can be a really important turning point in the healthcare of these individuals. Not only is it going to build up some validation and trust on the patient end, but it’s also going to likely really start to facilitate and take the diagnostic process in a different direction when it comes to site of lesion and so forth. So really, it’s going to be helping both the patient with unexplained hearing concerns and also the clinician. So taking time to listen to these stories, but also taking time to pause and think critically about what else is needed for the particular patient sitting in front of you to enhance their person-centered care. That’s, those are the two doable, a little more

Speaker 1: Right.

Speaker 2: activities that I think clinicians can do.

Speaker 1: That makes good sense. Those are things you can implement in daily practice.

Speaker 2: Yeah.

Speaker 1: Aryn, did you have anything that you wanted to add?

Speaker 3: Mm-hmm. I think Brittan’s got it on the head. I mean, of course there’s big things like, oh, we need more research to actually figure out what is going on with these, with these patients.

Speaker 1: Mm-hmm.

Speaker 3: my guess is that this is there are a lot of different things going on. There… That this is not a homogeneous group, that there’s not just one thing that’s underlying this entire patient population.

Speaker 1: Mm-hmm.

Speaker 3: and we’ll need a lot, a lot more a lot more tests to figure out what’s happening. But that is many years down the road.

Speaker 1: All Well, and if I could add one thing about this, and I think you, you cite this in your paper I think underlying all of this is that the clinician needs to be skeptical about the audiogram and know the limitations.

Speaker 3: Yeah.

Speaker 1: You know, we only test out to 8,000. We know that there are many people out there, younger people middle-aged people, that have hearing loss in the extended high frequencies that probably contributes to this problem. We know that sometimes we can we see a disconnect between the pure tone audiogram and somebody’s ability to hear a noise on tests like this, the QuickSIN or the WIN. We also know, and I think there’s a recent group, the, the NASEM, National Academy of Science, Engineering and Medicine

Speaker 3: Yes.

Speaker 1: recently came up with some guidelines around lifestyle wellness, auditory wellness, those kinds of things, and they say that everyone should have a, a questionnaire or a self-report, like the Hearing Handicap, the revised version of the Hearing Handicap Inventory because that will a, you might be, you might find something that looks, that’s… You can quantify on a scale like that, that you wouldn’t find in the routine audiogram. So that’s my, that’s my take. I don’t know if you wanted to elaborate on what I just said, but if there’s

Speaker 2: I did wanna dovetail off of what you were saying,

Speaker 1: Mm-hmm.

Speaker 2: these are things that Aryn and I have both had conversations about, and we enthusiastically endorse as well. And I think, not only making sure that self-report measures of prior clinical care, I think also we as audiologists are hesitant or forgetful to also include screeners of health and wellbeing. So, something like the PHI to look for depression, or the AHQ to look for anxiety. These can be important markers as well and important tools that we can use, not because it’s within our scope of practice to support these people’s mental health, but it is within our scope of practice to recognize the ramifications of hearing communication problems on the whole body, mind, and life of these individuals. So by having screeners such as that for health and wellbeing, we can also refer out to other professionals with clear intentions of why we’re referring out, versus some of the stuff we found in our, our research study and find these, where people are just referring in this back and forth and long and boring tennis match, but without clear intentions of why you’re supporting and what kind of professional support you need. So yeah, I agree. Self-report is key. Trusting the self-report, not, “Oh, they don’t know their body. Oh, that can’t be the case because I saw this audiogram,” as you were alluding to.

Speaker 1: Mm-hmm.

Speaker 2: And also making sure we assess and talk about holistic wellbeing and how it’s related to communication and listening skills.

Speaker 1: Great point, and that’s actually, you know, maybe a topic for another day, but I’d love at some point to have a conversation with you about the role of the audiologist in screening for mental health and anxiety and things like

Speaker 2: Yeah. Yeah, I’m passionate about it and think it’s important.

Speaker 1: Well, we’ll save that for another day. Maybe that’s something, right? My, my as we wrap things up here what current or future studies are, are you working on that might be related or even unrelated to this topic?

Speaker 2: Yeah, well, as evident by today, it’s clear that Aryn and I are this, these truly interdisciplinary collaborators. So it probably won’t surprise you to learn that my other research interests are also rooted in how people with hearing loss and their families experience daily living and audiological care. So lots of my work explores how individuals make meaning of hearing loss, what, what stories people are telling themselves about their hearing loss and sharing with others, how those shape expectations, and also how those stories might be able to be changed in positive ways to change people’s perspective of hearing and their overall rehabilitation experience. But my goal is ultimately how can we use what we learn firsthand from patients to inform change and improve clinical care provisions for the better? So I have a lot of work in that regard from college students affected by hearing loss, lots of work with kids with cochlear implants and their parents who have typical hearing. And then the work with Erin and I is continuing with patients with unexplained hearing loss or hearing concerns rather. Aryn I’ll go ahead and let you tie it up.

Speaker 1: You get the final…Aryn you get the final word.

Speaker 3: Yeah, yeah. So we are following up on this study in a couple ways. We are currently gathering information on what students and practicing clinicians in the US know about this population and how they face this clinical conundrum. And we are also gathering more narrative stories from these patients just about their daily lives and living with these hearing concerns. And then personally on my own, I still have a deep interest in developing more sensitive tests of sensorineural pathologies. So maybe even identifying what could be going on in some of these patients. So I also am working now on an approach for a new approach to analyze auditory evoked potentials and leveraging artificial intelligence to find new biomarkers of sensory neural pathologies in auditory evoked potentials. So yeah.

Speaker 1: Excellent. Well just to wrap things up our guests this week are Brittan Barker and Aryn Kamerer, who are professors at Utah State University. Our topic, the experiences of people with unexplained hearing concerns and their normal audiograms, and how those normal audiograms are probably not telling a very good story about what brought them into the clinic. So again, Aryn and Brittan, I can’t thank you enough for your time and for your expertise for being with us this week.