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

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          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.

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          Most cited references27

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          Approaches, tools and methods used for setting priorities in health research in the 21st century

          Background Health research is difficult to prioritize, because the number of possible competing ideas for research is large, the outcome of research is inherently uncertain, and the impact of research is difficult to predict and measure. A systematic and transparent process to assist policy makers and research funding agencies in making investment decisions is a permanent need. Methods To obtain a better understanding of the landscape of approaches, tools and methods used to prioritize health research, I conducted a methodical review using the PubMed database for the period 2001–2014. Results A total of 165 relevant studies were identified, in which health research prioritization was conducted. They most frequently used the CHNRI method (26%), followed by the Delphi method (24%), James Lind Alliance method (8%), the Combined Approach Matrix (CAM) method (2%) and the Essential National Health Research method (<1%). About 3% of studies reported no clear process and provided very little information on how priorities were set. A further 19% used a combination of expert panel interview and focus group discussion (“consultation process”) but provided few details, while a further 2% used approaches that were clearly described, but not established as a replicable method. Online surveys that were not accompanied by face–to–face meetings were used in 8% of studies, while 9% used a combination of literature review and questionnaire to scrutinise the research options for prioritization among the participating experts. Conclusion The number of priority setting exercises in health research published in PubMed–indexed journals is increasing, especially since 2010. These exercises are being conducted at a variety of levels, ranging from the global level to the level of an individual hospital. With the development of new tools and methods which have a well–defined structure – such as the CHNRI method, James Lind Alliance Method and Combined Approach Matrix – it is likely that the Delphi method and non–replicable consultation processes will gradually be replaced by these emerging tools, which offer more transparency and replicability. It is too early to say whether any single method can address the needs of most exercises conducted at different levels, or if better results may perhaps be achieved through combination of components of several methods.
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            A review of hyperacusis and future directions: part I. Definitions and manifestations.

            Hyperacusis can be extremely debilitating, and at present, there is no cure. We provide an overview of the field, and possible related areas, in the hope of facilitating future research.
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              The Brain Basis for Misophonia

              Summary Misophonia is an affective sound-processing disorder characterized by the experience of strong negative emotions (anger and anxiety) in response to everyday sounds, such as those generated by other people eating, drinking, chewing, and breathing [1, 2, 3, 4, 5, 6, 7, 8]. The commonplace nature of these sounds (often referred to as “trigger sounds”) makes misophonia a devastating disorder for sufferers and their families, and yet nothing is known about the underlying mechanism. Using functional and structural MRI coupled with physiological measurements, we demonstrate that misophonic subjects show specific trigger-sound-related responses in brain and body. Specifically, fMRI showed that in misophonic subjects, trigger sounds elicit greatly exaggerated blood-oxygen-level-dependent (BOLD) responses in the anterior insular cortex (AIC), a core hub of the “salience network” that is critical for perception of interoceptive signals and emotion processing. Trigger sounds in misophonics were associated with abnormal functional connectivity between AIC and a network of regions responsible for the processing and regulation of emotions, including ventromedial prefrontal cortex (vmPFC), posteromedial cortex (PMC), hippocampus, and amygdala. Trigger sounds elicited heightened heart rate (HR) and galvanic skin response (GSR) in misophonic subjects, which were mediated by AIC activity. Questionnaire analysis showed that misophonic subjects perceived their bodies differently: they scored higher on interoceptive sensibility than controls, consistent with abnormal functioning of AIC. Finally, brain structural measurements implied greater myelination within vmPFC in misophonic individuals. Overall, our results show that misophonia is a disorder in which abnormal salience is attributed to particular sounds based on the abnormal activation and functional connectivity of AIC.
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                Author and article information

                Journal
                BMJ Open
                BMJ Open
                bmjopen
                bmjopen
                BMJ Open
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                2044-6055
                2019
                21 November 2019
                : 9
                : 11
                : e032178
                Affiliations
                [1 ] departmentNational Institute of Health Research Nottingham Biomedical Research Centre , University of Nottingham , Nottingham, UK
                [2 ] departmentHearing Sciences, Division of Clinical Neuroscience, School of Medicine , University of Nottingham , Nottingham, UK
                [3 ] departmentDepartment of Paediatric Audiology , Bolton NHS Foundation Trust , Bolton, UK
                [4 ] departmentDepartment of Psychology , University of Stirling , Stirling, UK
                [5 ] The Tinnitus and Hyperacusis Centre , London, UK
                [6 ] Peter Byrom Audiology , Sheffield, UK
                [7 ] departmentNottingham Audiology Services , Nottingham University Hospitals NHS Trust , Nottingham, UK
                [8 ] Cochrane UK , Oxford, UK
                [9 ] Children’s Hearing Evaluation & Amplification Resource , London, UK
                [10 ] departmentDepartment of Otolaryngology , Norfolk and Norwich University Hospital NHS Trust , Norwich, UK
                [11 ] Action on Hearing Loss , London, UK
                [12 ] The James Lind Alliance, National Institute of Health Research Evaluation, Trials and Studies Coordinating Centre , Southampton, UK
                Author notes
                [Correspondence to ] Dr Kathryn Fackrell; kathryn.fackrell@ 123456nottingham.ac.uk
                Author information
                http://orcid.org/0000-0001-6529-8643
                http://orcid.org/0000-0002-0767-0723
                http://orcid.org/0000-0002-0547-4403
                http://orcid.org/0000-0002-8768-1392
                Article
                bmjopen-2019-032178
                10.1136/bmjopen-2019-032178
                6886978
                31753886
                fae81b4a-e175-4f22-a2e7-43a1466d8500
                © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ.

                This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

                History
                : 06 June 2019
                : 10 September 2019
                : 08 October 2019
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100000703, Action on Hearing Loss;
                Award ID: Flexi grant 2017
                Funded by: FundRef http://dx.doi.org/10.13039/100010468, British Society of Audiology;
                Award ID: Applied Research Grant
                Categories
                Ear, Nose and Throat/Otolaryngology
                Original Research
                1506
                1690
                Custom metadata
                unlocked

                Medicine
                hyperacusis,james lind alliance,research,management,assessment
                Medicine
                hyperacusis, james lind alliance, research, management, assessment

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