Identifying and prioritising unanswered research questions for people with hyperacusis: James Lind Alliance Hyperacusis Priority Setting Partnership

Abstract

ObjectiveTo determine research priorities in hyperacusis that key stakeholders agree are the most important.Design/settingA priority setting partnership using two international surveys, and a UK prioritisation workshop, adhering to the six-staged methodology outlined by the James Lind Alliance.ParticipantsPeople with lived experience of hyperacusis, parents/carers, family and friends, educational professionals and healthcare professionals who support and/or treat adults and children who experience hyperacusis, including but not limited to surgeons, audiologists, psychologists and hearing therapists.MethodsThe priority setting partnership was conducted from August 2017 to July 2018. An international identification survey asked respondents to submit any questions/uncertainties about hyperacusis. Uncertainties were categorised, refined and rephrased into representative indicative questions using thematic analysis techniques. These questions were verified as ‘unanswered’ through searches of current evidence. A second international survey asked respondents to vote for their top 10 priority questions. A shortlist of questions that represented votes from all stakeholder groups was prioritised into a top 10 at the final prioritisation workshop (UK).ResultsIn the identification survey, 312 respondents submitted 2730 uncertainties. Of those uncertainties, 593 were removed as out of scope, and the remaining were refined into 85 indicative questions. None of the indicative questions had already been answered in research. The second survey collected votes from 327 respondents, which resulted in a shortlist of 28 representative questions for the final workshop. Consensus was reached on the top 10 priorities for future research, including identifying causes and underlying mechanisms, effective management and training for healthcare professionals.ConclusionsThese priorities were identified and shaped by people with lived experience, parents/carers and healthcare professionals, and as such are an essential resource for directing future research in hyperacusis. Researchers and funders should focus on addressing these priorities.

Development and Initial Validation of the Duke Misophonia Questionnaire

“…Participants were allowed to type in sounds not captured by the listed response options, under “other.” These qualitative responses were analyzed and separated into four categories based on the authors' assessment– (a) responses that could be included under existing options, without modifying the category, (b) responses that could be included in existing options by broadening the options, (c) responses that were considered very specific, and therefore best captured under the other response, and (d) responses that implied distress about the loudness of the sound, more so than the sound itself, which could conflate the experience with hyperacusis (Fackrell et al, 2019 ). Based on this categorization, some existing response options were broadened (e.g., Speech sounds was added as an option instead of Certain consonants or vowels, Styrofoam rubbing together was added as an example of Rubbing sounds ).…”

A Delphi survey to determine a definition and description of hyperacusis by clinician consensus

“…In terms of hyperacusis management, there is little in the literature (Fackrell et al, 2017), and many unanswered questions. Recently, a set of 28 research priorities were defined using the James Lind Alliance Priority Setting Partnership method (Fackrell et al, 2019a, Fackrell et al, 2019b . As well as priorities relating to the physiology and treatment of hyperacusis, many questions related to diagnostic criteria, and how to distinguish hyperacusis from other hearingrelated conditions.…”

Development and Initial Validation of the Duke Misophonia Questionnaire

“…Participants were allowed to type in sounds not captured by the listed response options, under “other”. These qualitative responses were analyzed and separated into four categories based on the authors’ assessment– (a) responses that could be included under existing options, without modifying the category, (b) responses that could be included in existing options by broadening the options, (c) responses that were considered very specific, and therefore best captured under the other response, and (d) responses that implied distress about the loudness of the sound, more so than the sound itself, which could conflate the experience with hyperacusis (Fackrell et al, 2019). Based on this categorization, some existing response options were broadened (e.g.…”