Characterising the Misophonia population: Online patient self-support groups and internet questionnaires

V.L. Kowalkowski*§, K. Krumbholz*
*MRC Institute of Hearing Research, UK, §University of Nottingham, UK

The term ‘Misophonia’ was coined by otolaryngologists approximately fifteen years ago to identify a population of individuals who experience negative emotional responses to certain everyday sounds (Jastreboff & Jastreboff, 2001), but who do not fit the criteria of hyperacusis. Misophonia is thought to be caused by dysfunctional interaction between the auditory and limbic systems (Jastreboff & Jastreboff, 2001), and might therefore share similarities with tinnitus distress.

Whereas tinnitus has attracted intense research interest, little systematic research exists on misophonia, probably because the condition is purportedly rare. Online support networks for misophonia, however, suggest a much greater prevalence than seen in the clinic. This is supported by a recent group study of misophonia, based on 42 patients, which reported that recruitment through self-referral was easy (Schröder et al., 2013).

We developed an online questionnaire, targeted at online misophonia support groups, to determine to what extent findings by previous case studies (Edelstein et al., 2013, Webber et al., 2014) represent the wider misophonia population. The questionnaire combines psychological and audiological approaches by containing an adapted version of the diagnostic-oriented A-Miso-S questionnaire, as well as two new questionnaires: the Misophonia Handicap Questionnaire (MHQ) and Misophonia Handicap Inventory (MHI).

We present analyses of the data from 160 respondents, obtained within four months of the questionnaire’s release. The methodological approach described by Terwee et al (2007) was used to evaluate the measurement properties of the new misophonia questionnaires. Future work will be aimed at validating the new questionnaire measures, and assessing their usefulness in clinical and research settings. Some of the questionnaire participants will be invited for EEG recordings of spontaneous and evoked brain activity, to be compared with subjects suffering from bothersome tinnitus.

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