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There are several misophonia questionnaires available for people to use. But how do you know which one is the right one for you?

In this campaign, we ask MRF funded investigators and researchers about their work developing and validating misophonia questionnaires, and why people with misophonia should take the results of one questionnaire or another to their physician. Read on to learn more about the Sussex Misophonia Scale for Adults.

1. What is the purpose of a questionnaire? How are they used for diagnostic, treatment evaluation, and research purposes?

Questionnaires are useful tools to assess someone’s abilities, opinions, or experiences and to compare it with other people in a meaningful way. When we’re looking at using questionnaires to tell if a person has a condition, like misophonia, we’re asking people questions that relate to features of that condition. For example, we might ask if people dislike certain sounds like chewing. This is a feature that is very specific to misophonia, so we’re expecting that if you don’t have misophonia you won’t experience this. We build up a questionnaire with multiple questions like this, but usually phrased as statements you have to agree or disagree with or statements that describe how often something happens (e.g., “Certain sounds make me feel disgusted, even if those sounds don't disgust other people”: never, hardly ever, sometimes, often, always?). This gives us a distribution of scores so we cannot just tell if someone has misophonia, but also how severely they are affected by the condition.

Questionnaires are used for all sorts of things! In research they can be used to identify who has misophonia and who doesn’t so that we can compare how they differ in other ways (e.g., in a test of concentration). They can be used by family doctors/ general medical practitioners to screen someone for misophonia and point them in the direction of the support they need, and they can be used by clinicians to make a firm diagnosis or track whether a therapy is working.

2. What does it mean for a questionnaire to be validated? Why is this important?

A validated questionnaire means that we’ve checked statistically that our questionnaire does what we think it should do. That means that if we are trying to measure how severe someone’s misophonia is, the validation will confirm whether it is, in fact, measuring misophonia severity (and not something similar like a general sensory sensitivity). It also means we’ve checked that our questionnaire is reliable. For it to be reliable it should be fairly consistent over time: if you take the questionnaire today, and then again tomorrow your answers shouldn’t be wildly different. This is important because one use of questionnaires is to track severity of misophonia over time- after a therapeutic intervention for example. So, if your misophonia severity has gone down, we need to make sure this is because your symptoms have reduced, and not because of an issue with how the questionnaire measures misophonia.

3. What gaps (clinically and for research purposes) exist with the current questionnaires? And what ongoing research may be in the works to address those?

We now have a range of robust questionnaires for adults and adolescents, but testing younger children using questionnaires comes with a whole new set of problems to tackle. It’s important to test children, because the earlier we can identify misophonia, the earlier we can intervene before misophonia begins to affect people’s quality of life. However, very young children are often just learning to read, and also have a yes-bias where they’ll agree with questions even if it doesn't apply to them!

The good news is that we have a number of questionnaires now designed for children and adolescents, including a pictorial test for young children where they see pictures instead of a lot of words, and we have an adolescent questionnaire which mirrors our adult Sussex Misophonia Scale (helping us to compare older children to adults). We’ve already validated the adolescent questionnaire, and we’re in the process of making it even more robust by validating it in a bigger number of adolescents this time using a US-based sample instead of a UK-based sample. We also have another collaboration in place to validate the pictorial Sussex Misophonia Scale for children- so watch this space!  

4. How does the Sussex Misophonia Scale for Adults measure misophonia compared to other questionnaires? Has it been validated yet?

The Sussex Misophonia Scale for Adults (SMS-A) has been validated and is published in a peer reviewed article. The great news is that we found that the scale is considered “excellent” and is valid and reliable.

The benefits of our questionnaire in particular are that we were able to use a statistical method to identify a cut-off threshold beyond which we can confidently say someone is experiencing misophonia, and we have a scale that contains subscores so as well as telling you what trigger sounds a person has, and how severe their misophonia is we can also give information on how misophonia relates to well-being and life consequences (e.g. missing work), and questions that related to avoidance and repulsion for example.

5. Why should someone with misophonia bring the results of the Sussex Misophonia Scale for Adults to their clinician/physician over other questionnaires?

One of the great benefits of our scale is that its freely available at the click of a button because you can take it online at misophonia-hub.org/test. It also gives instant automatic scoring, as well as a results page that can be easily shared. It’s ethical and safe. As well as indicating whether you pass the threshold for misophonia, it also gives you a list of all of the sounds you find trigger your misophonia, as well as your misophonia severity score. Finally, all this is accompanied by easy explanations designed for the lay person, explaining what all this means. At the end we also have written a page for you to send directly to a clinician/physician so we’ve taken all of the hard work of interpreting questionnaire results out of the equation and made it really easy to share with relevant professionals. Finally, it comes packaged with pointers to support and services on the same website.

6. Are there resources available for clinicians and researchers to learn more about the Sussex Misophonia Scale for Adults or how to use it effectively?

Yes! We have a dedicated website the misophonia hub (misophonia-hub.org) which houses all of our tests, a page for clinicians, a page for researchers containing links to misophonia research, and a page for parents and teachers. We have a number of tools designed to help bridge the knowledge gap between professionals not having heard of misophonia yet, and patients needing to seek help for the condition. These are in the form of downloadable factsheets (one for adults facilitating communication with clinicians, one for parents facilitating communication with educators) which anyone can download fill out the details of their condition and how it affects them, and send to the relevant professionals who are re-directed back to our site to broaden their understanding of misophonia and how to support people living with misophonia.

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To take the Sussex Misophonia Scale for Adults and explore more of Dr. Simner and Dr. Rinaldi’s work on misophonia, visit the Misophonia-Hub.org. We thank them and their team for their dedication to misophonia research and advocacy.

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