Is there any research underway to estimate the percentage of people at risk or experiencing symptoms? Is anyone designing a research survey to investigate prevalence in any population?
“Wondering about research”
This is an excellent question and I am really glad that you brought up this issue. A prevalence study in both the general population and in specific populations would be a logical next step in researching this disorder. As of now I don’t know of anyone who has done this with a large sample. However, that doesn’t mean that someone is not planning to do so.
One of the problems in doing a prevalence study is that we have to first have good measures of misophonia (e.g. surveys, tests, etc.). How do we really know what the exact symptoms of misophonia are across any population? Without a proven measure (survey, scale or test) we don’t know. On the other hand, how is good measure developed without some confirmation regarding exactly what the symptoms of misophonia are? I know this sounds like a circular argument and in fact it is. Unfortunately, this is a painstakingly laborious process in research, and far from an exact science.
If there were, for example, a blood test for misophonia than a prevalence study would be easy. However, we cannot say what the criterion is for diagnosing misophonia much less how many people are affected. Is misophonia just auditory based? Does it include visuals? Which are the most aversive sounds to people with misophonia? Does everybody have the same physiological reaction when presented with noxious noise? The answers to these question probably seem obvious to each of us because we have misophonia. Yet, when one looks at data, it is often contradictory. Defining a new disorder is really difficult. Regarding risk factors, it is premature to say with certainty what might be risk factors for misophonia until we know a little more about the underlying mechanisms of the disorder.
We certainly should be in the process of refining measures (surveys and tests) both in terms of defining misophonia and then in order to do prevalence studies. Unfortunately, I see a lot of different surveys being used in the research without any unity, with some comparing misophonia to other disorders, some measuring misophonia in terms of levels of reactivity and very few asking about the actual sounds that we find aversive. In my opinion this is not helping to speed the research along, or the understanding of misophonia. Hopefully, we will see better surveys and meaningful prevalence studies underway soon, and hopefully these studies will inform treatment and our understanding of risk factors as well.
Thank you for your thoughtful question!