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DanMalcore

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Dan
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Dr. David Baguley was gracious to send us this article.

Top ten hyperacusis research priorities in the UK

Hyperacusis involves a reduced tolerance or increased sensitivity to everyday sounds, whereby they become intense and overwhelming. This condition is  experienced by 3·7% of children and up to 9·2% of adults in  the  world, with a higher prevalence in certain populations, such as people who have Williams’ syndrome or autism spectrum   disorders.   Hyperacusis- associated problems are many, including fear, pain, avoidance behaviours, and impairments to quality of life, such as reduced ability  to  work.  For  children  with hyperacusis, the classroom can be particularly challenging, and strategies are needed to ensure their well being and educational needs are met.  Richard  S Tyler  and  colleagues proposed a framework for categorizing hyperacusis according to features of the experience, suggesting that loudness, annoyance, fear, and pain are important defining characteristics. For many, hyperacusis is also isolating, with thousands turning to Facebook and other social media for information and support. Clinical assessment of hyperacusis includes sound-based tolerance tests and questionnaires to measure the effect it has on an individual’s life.4 Treatment approaches include sound and cognitive behavior therapies, although no formal clinical practice guidance currently exists.

The Hyperacusis Priority Setting Partnership (PSP) was established to identify the questions about hyperacusis that are the most important to health-care professionals and people with lived experience of hyperacusis (patients and their parents). The PSP included people with lived experience of hyperacusis; health- care professionals who specialise in clinical and cognitive psychology, audiology, and otolaryngology; researchers; and representatives from organisations involved in supporting people with hyperacusis, funding re- search, and communicating science.

Using James Lind Alliance methods, the PSP started with two surveys. In the first, 312 respondents worldwide submitted 2370 research questions, termed uncertainties. Of these re- spondents, 179 were people with lived experience and 86 were health-care professionals, of whom one also had hyperacusis. 38 respondents were either parents, carers, family members, friends, or teachers. Submitted ques- tions were verified as unanswered in the research literature. Questions were processed and narrowed down to 85, which were listed in a second survey. In the second survey, 327 participants voted for their individual priorities. From the 28 questions that received the most representative votes, ten research priorities were agreed upon during the final workshop that involved 21 participants, held July, 2018, in Nottingham, UK (panel). The top ten research priorities for hyperacusis focus on treatment, cause, mechanism, prevalence, and health-care provider knowledge and training. These priorities provide an important platform for researchers, funding bodies, and the health-care sector to ensure that future research focuses on questions that are important to health-care practitioners and people with lived experience of hyperacusis.

We declare no competing interests. This work was supported by funding provided by the British Society of Audiology and Action on Hearing Loss. KF and DJH are funded by the National Institute for Health Research (NIHR) Biomedical Research Centre programme, however the views expressed as those of the authors and not necessarily those of the NIHR, the National Health Service, or the Department of Health and Social Care.

NIHR Nottingham Biomedical Research Centre, Hearing Sciences, Division of Clinical Neuroscience, School of Medicine, University of Nottingham, NG1 5DU, UK (KF, DJH); Hyperacusis Support and Research Facebook group, London, UK (LS); and James Lind Alliance, National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre, Southampton,

Panel: Top ten research priorities for hyperacusis

1.     What is the most effective treatment approach for hyperacusis in children?

2.     What is the prevalence of hyperacusis in a general population and other specific populations (eg, people with autism, mental health issues, learning disabilities, or hearing loss)?

3.     Are there different meaningful types of hyperacusis?

4.     What is the essential knowledge and training required for health professionals to appropriately refer or effectively manage hyperacusis?

5.     Which treatment approaches are most effective for different types or severities of hyperacusis?

6.     Is hyperacusis due to physical or psychological issues or is it a combination of both?

7.     Which psychological therapy (eg, counselling, cognitive behavioral therapy, or mindfulness) is most effective for hyperacusis?

8.     What management approach for hyperacusis is most effective for adults and children with autism?

9.     What is the best way of using sound in therapy for hyperacusis?

10. Which self-help interventions are effective for hyperacusis?

 

 

1        Fackrell K, Potgieter I, Shekhawat GS, Baguley DM, Sereda M, Hoare DJ.

Clinical interventions for hyperacusis in adults: a scoping review to assess the current position and determine priorities for research. BioMed Res Int 2017; 2017: 2723715.

2        Fackrell K, Sereda M, Sheldrake J, Hoare DJ. Untangling the relationship between tinnitus and hyperacusis: what are the

problems reported by patients with a primary complaint of hyperacusis. 11th Tinnitus Research Initiative conference; Regensburg, Germany; March 16–18, 2018. 211.

3        Tyler RS, Pienkowski M, Roncancio ER, et al.

A review of hyperacusis and future directions: part I. Definitions and manifestations.

Am J Audio 2015; 23: 402–19.

4        Fackrell K, Hoare DJ. Scales and questionnaires for decreased sound tolerance. In: Baguley D, Fagelson M eds. Hyperacusis and disorders of sound intolerance: clinical and research perspectives: San Diego, Plural Publishing, 2019.

5        Baguley DM, Hoare DJ. Hyperacusis: major research questions. HNO 2018; 66: 358–63.


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