A Survey on Self-Management and Empowerment of Tinnitus Talk Users

[Jorge P. Simoes]

Hi folks,

My name is Jorge and I am an assistant professor of AI and mental health at the University of Twente, the Netherlands. I am collaborating on a project with @Hazel and @Markku where we investigate the profile of the users of Tinnitus Talk on different dimensions. We came up with an online survey to better understand the relationship between passive and active engagement on Tinnitus Talk on users (1) empowerment, (2) self-management, (3) and perception of tinnitus on one's health. We are also assessing (4) the quality of care you received for your tinnitus from a healthcare provider.

Empowerment and self-management are two key components when coping with chronic conditions, especially when dealing with a condition like tinnitus where not so many (effective) therapeutic options are available (point 4). Unfortunately, this is very little investigated in tinnitus research, and we aim to fill this important research gap.

We aim to have the results of this survey published in a peer-reviewed publication and will also be used in research grants that @Hazel, @Markku, and I are working on, so your participation is very much appreciated. Also, feel free to share this survey with anyone suffering from tinnitus, regardless of whether they are users of Tinnitus Talk or not, we are aiming for a few hundred participants but the more the better.

We expect participants will need approximately 20 minutes to complete the survey, and it can be filled in with all types of devices and browsers. We are collecting only anonymized data, and we will not track any personal information of participants whatsoever. Also, we are only using validated questionnaires that are used in research or clinical practice, so we expect little burden on participants. One downside of using validated questionnaires is that some questions may seem out of context for some, as these questionnaires were developed to assess chronic conditions in general, and not necessarily apply to tinnitus. Please try to answer each of the questions the best you can.

And finally, please feel free to reach me if you have suggestions for this or future surveys. Also, feel free to reach out to me if you have particular ideas or skill sets that may be relevant for analyzing this data or if you have research ideas you would like to discuss.

Here's the link for the survey:

https://utwentebs.eu.qualtrics.com/jfe/form/SV_0JtmgFdWVJthcpw

Thank you very much for participating in this survey!

 

[Nick47]

Done.

Hi @Jorge P. Simoes, welcome back.

Any new avenues in the research world of tinnitus? We obviously had a bit of a breakthrough from the University of Michigan (Dr. Susan Shore), however, I read there was a drug target you were looking at in development around 2020.

You previously wrote "I am a co-author in an upcoming paper about the effects of a drug for tinnitus patients (sorry I can't go into too much details as the paper is still in preparation)."

Are you now able to elaborate on that?

 

[2noist]

Filled it!

 

[Jorge P. Simoes]

Hi @Nick47 ,

Thank you very much for participating in the survey, I really appreciate it

I haven't seen the results of Dr. Shore's work yet (I believe it has not been published yet), but from what I've heard from some people, there's room for some cautious optimism.

I am also interested in an ongoing, open-label trial evaluating Brexanolone (Allopregnanolone) for tinnitus. Allopregnanolone is a very interesting neurosteroid under intense investigation in the last 15 years or so for its therapeutic effect on anxiety, depression, and chronic stress. These effects are interesting on their own for bothersome tinnitus, but Allopregnanolone also modulates GABA-A, which has been implicated in tinnitus in several studies. Fingers crossed for positive results! (It goes without saying that I am not a medical doctor and I do not recommend self-experimenting with it without medical supervision!).

And I really like the two papers recently published by Dr. Kenneth Morse, and Prof. Kathy Vander Werff (I think you already mentioned both in Research News). My impression is that there's too little signal-to-noise ratio in auditory evoked potentials from ABR, although other researchers like Dr. Christopher Cederroth, whose work I am also a big fan of, were successful contrasting controls from tinnitus with ABR (he did have a considerable larger sample size, though). I have heard from others who know much more than me about electrophysiology and the auditory system that an objective measure of tinnitus, if there is one, would probably be found at later latencies as suggested by the results of Dr. Morse and Prof. Vander Werff with CAEPs.

That's where some of my current thoughts/interests are atm

Sure, the research was published in 2021; I helped analyze the data from a small pilot on the effects of lidocaine injection on the otic ganglion. We saw some small effects, but statistically significant, of improvement in tinnitus distress and subjective tinnitus loudness. I moved to another group since then, so I, unfortunately, do not know what's the follow-up on it.

 

[Jorge P. Simoes]

Thank you very much @2noist

 

[Damocles]

 

[ECP]

Thank you, I have filled out the survey.

Speaking from my own experience, I have found this website and its participants very helpful to me. However, the quality of my experiences with my healthcare providers has varied dramatically. Some were very empathetic, knowledgeable, and able to provide useful treatments. Others were not worth seeing at all.

In the future, I'd like to see a survey that asks its users to quantify the number of healthcare providers they have seen and the number of encounters they have had with each provider, and also specify what type of provider it was (for example, an audiologist, a primary care doctor, an ENT doctor, a chiropractor, a dentist specializing in TMJ, an acupuncturist, a massage therapist, a physical therapist, social worker, psychiatrist, etc.)

If I could rank-order my healthcare providers from most helpful to least helpful, I'd say that the audiologist that I saw was the least helpful of all, which is ironic when you consider the fact that this is the medical specialty that is supposed to have the most expertise on tinnitus and hyperacusis. Everything my audiologist told me about how to manage my symptoms was wrong.

Equally surprising is the fact that my most helpful healthcare provider has been my acupuncturist / herbalist. I'm so grateful to her because without her, I would have probably committed suicide by now. She has no specialized training in disorders of the ear, but she has provided more empathy, more pain relief, and more autonomic nervous system re-setting than anybody else I've consulted.

 

[ZFire]

Completed (in 45 minutes). Did my best to answer in good faith.

 

[Jorge P. Simoes]

Thank you very much @Damocles, I really appreciate it

 

[Jorge P. Simoes]

Thank you very much for participating in the survey and for sharing your experience, @ECP.

The description of your experience is exactly what this survey is trying to capture, and I hope to use its results to share with others the good deeds of Tinnitus Talk.

Here are some published data from a few years ago where my colleagues and I asked participants which healthcare providers they visited specifically for their tinnitus, but we did not rank the most/least useful. That's a great idea for a future survey, maybe it could also include other conditions like hyperacusis and misophonia.

I am also happy to hear that you found a professional that can support you I would also like to explore "non-traditional" medicine avenues for managing chronic conditions, as this is a topic IMO still seen with too much stigma, although highly valuable. I am also very interested in investigating/quantifying/sharing the value of humanized, empathic healthcare. Carl Jung has a great quote: "Know all the theories, master all the techniques, but as you touch a human soul be just another human soul".

 

[Jorge P. Simoes]

Thank you very much, @ZFire, and I'm sorry it took longer than what I estimated in the first post.

Your contribution is much appreciated

 

[ZFire]

Thank you very much, @ZFire, and I'm sorry it took longer than what I estimated in the first post.

Your contribution is much appreciated

No need for apologies. I deliberately took my time with the survey to make sure my answers were genuine. I'm sure the estimated time is accurate

 

[Tiles]

Done. Didn't quite take 20 minutes.

 

[Stayinghopeful]

Hi @Jorge P. Simoes, I just read your comment in regards to Allopregnanolone and its effects on GABA modulation.

I did a little quick Google research.

I came across a product called Pregnenolone that apparently inhibits the GABA receptor. Am I right in assuming that Allopregnanolone and Pregnenolone are different and, as tinnitus sufferers, we don't want our GABA inhibited?

Thanks in advance.

 

[Tiles]

Hi @Jorge P. Simoes, I just read your comment in regards to Allopregnanolone and its effects on GABA modulation.

I did a little quick Google research.

I came across a product called Pregnenolone that apparently inhibits the GABA receptor. Am I right in assuming that Allopregnanolone and Pregnenolone are different and, as tinnitus sufferers, we don't want our GABA inhibited?

Thanks in advance.

I sure don't know enough to dispute an open-source source, but Wikipedia says allopregnanolone is made from pregnenolone (which certainly isn't the same thing.) See the first line of the "Molecular Interactions" section:

→ Wikipedia: Allopregnanolone

Farther down it says:

In addition to oral progesterone, oral pregnenolone has also been found to act as a prodrug of allopregnanolone, though also of pregnenolone sulfate.

 

[Jorge P. Simoes]

Thank you very much for participating in the survey, @Tiles, and I'm sorry it took longer to complete it than estimated

 

[Jorge P. Simoes]

Hi @Stayinghopeful,

Pregnenolone and Pregnanolone are two different steroids.

Pregnenolone is the precursor of almost all other steroids we produce, and synthesized directly from cholesterol. Meanwhile, pregnanolone is a steroid derived from progesterone and similar to allopregnanolone.

I think your assumption regarding GABA is correct, but that is more a gut feeling than anything else. I am unaware of evidence linking negative negative modulation of GABA and tinnitus.

Cheers

 

[JimmyStrong]

I did this yesterday. Hopefully your good work will not be in vain.

 

[Jorge P. Simoes]

Thank you very much @JimmyStrong!

 

[Awerlu]

I filled it in. I wasn't sure about the hyperacusis questions as I'm autistic and have always struggled with sounds in that way. Gaining chronic tinnitus did not change my hyperacusis.

 

[star-affinity]

I filled it in.

I think it would be good if more than one kind of tinnitus could have been chosen. I have three sounds, but only two that are really bothersome and, of those two, it's one that is truly debilitating.

But for the survey I naturally chose to answer questions about the sound that I find the hardest to cope with.

 

[Joshua Macleod]

I think it would be good if more than one kind of tinnitus could have been chosen.

Absolutely, many have a plethora of tones, both unilateral and bilateral, with both constant and intermittent tinnitus, ranging from tones to noises, ranging in frequencies etc.

Grateful to have the opportunity to participate but the breadth of tinnitus for many of us isn't encapsulated in this.

 

[Jorge P. Simoes]

Thank you very much for participating in the survey and for the feedback, @Awerlu, @star-affinity, and @Joshua Macleod

The sampling questionnaire we used is called the Tinnitus Sampling Case History Questionnaire, which is known to have some limitations. Developing a better version of it with the feedback of this community, one that better captures the breadth of tinnitus as Joshua put, could be a very nice participatory project and one that could be very beneficial for the research community in general.

I will discuss this idea with @Hazel and @Markku next time I meet them thanks for the feedback!

 

[JPGL]

Done. I hope this helps.

 

[Toby1972]

Done in 15 minutes.

 

[ErikaS]

Completed.

 

[Jorge P. Simoes]

Thank you very much @Toby1972 and @ErikaS.

And I would also like to thank all 107 participants of the survey. I will start with the data analysis and will share it in this thread once I have some results

 

[Nick47]

@Jorge P. Simoes, I would like to thank you as a researcher for joining our community. It is something we would like more researchers to do, and is part of @Hazel's presentation at the TRI 2023.

Take care.

 

[Jorge P. Simoes]

Thanks, @Nick47 and I would like to invite you and other members of the community to reach me in case you have research ideas you would like to discuss/pursue. I truly appreciate the knowledge transfer from interacting with the broader society.