Peer-reviewed article
Identifying and prioritising unanswered research questions for people with hyperacusis: James Lind Alliance Hyperacusis Priority Setting Partnership.
Kathryn Fackrell, Linda Stratmann, Veronica Kennedy, Carol MacDonald, Hilary Hodgson et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This is a research priority-setting study about hyperacusis, a condition of increased sensitivity to sound. While it involved some parents and children as stakeholders, the study's primary focus is on identifying research questions for people with hyperacusis across all ages, not specifically on child well-being. The document describes a structured process to identify and rank unanswered research questions in this field.
Key points
- 312 respondents submitted 2,730 uncertainties about hyperacusis in an identification survey
- 85 indicative questions were refined from the uncertainties, none of which had been answered by existing research
- A second survey collected 327 votes, resulting in 28 shortlisted questions
- Top 10 research priorities included identifying causes, underlying mechanisms, and effective management strategies
- The final priorities were shaped by people with lived experience, parents/carers, and healthcare professionals
Limitations
This document is a priority-setting exercise, not an evaluation of child well-being outcomes or interventions. It does not provide data on the prevalence, impact, or management of hyperacusis in children specifically, nor does it measure any health or developmental outcomes.
Abstract
OBJECTIVE: To determine research priorities in hyperacusis that key stakeholders agree are the most important. DESIGN/SETTING: A priority setting partnership using two international surveys, and a UK prioritisation workshop, adhering to the six-staged methodology outlined by the James Lind Alliance. PARTICIPANTS: People 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. METHODS: The 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). RESULTS: In 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. CONCLUSIONS: These 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.