The relationship between hyperacusis and tinnitus; an exploration of measures, characteristics, and lived experiencesTools Margol-Gromada, Magdalena (2025) The relationship between hyperacusis and tinnitus; an exploration of measures, characteristics, and lived experiences. PhD thesis, University of Nottingham.
AbstractTinnitus and hyperacusis are known to co-occur, but very little is known about the relationship between them, or the lived experiences of people who have both. The co-occurrence of tinnitus and hyperacusis introduces significant difficulties for the assessment and management of the conditions, hyperacusis measures are limited, and tinnitus measures do not capture co-occurrence in a way that reflects the true experience of people with both conditions. This research aimed to investigate the relationship between hyperacusis and tinnitus by characterising people who have co-occurring hyperacusis and tinnitus and exploring their lived experiences. A scoping review of research in people with tinnitus and hyperacusis was conducted and identified gaps in knowledge regarding basic demographic level information of people with tinnitus and hyperacusis, and the chronology of the two conditions. The most frequent measure of hyperacusis in research was found to be the Hyperacusis Questionnaire (HQ), for which significant issues with the underlying structural and content validity have been noted. This was used to inform the conceptualisation of a series of studies that aimed to address (1) whether hyperacusis questionnaires are fit for purpose in adults who have co-occurring hyperacusis and tinnitus, and (2) what is the real lived experience of having both conditions. Firstly, a readability assessment of five hyperacusis questionnaires, incusing the HQ was conducted, and found that all questionnaires exceeded recommended reading levels (5th to 6th grade), and all had considerable inter-item variability. High readability can compromise the reliability of data gathered using questionnaires, which are crucial for assessment and management of hyperacusis. A cross-sectional mixed-method study comprising of an online demographic survey (Phase 1) and semi-structured interviews (Phase 2) was conducted to gather characteristics of people with co-occurring hyperacusis and tinnitus, and their lived experiences. Finally, the first evaluation of the HQ in a population with co-occurring hyperacusis and tinnitus was carried out, inspecting structural and content validity, reliability, and responsiveness of the scale. The underlying structure was not confirmed in this population, and results indicate that the HQ may not be a valid measure of hyperacusis in people with co-occurring tinnitus and hyperacusis.
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