In this blog, members of the new James Lind Alliance Priority Setting Partnership on hyperacusis talk about how they’re going about finding out what matters to people affected by this condition, how this will shape future research and how you might be able to help.
Hyperacusis? I confess that, until recently, I hadn’t heard of it and perhaps you haven’t either. But when I was asked to be involved in the James Lind Alliance Priority Setting Partnership (PSP) to find the top priorities for hyperacusis research, I didn’t hesitate to say yes. I have already had experience of participating in a PSP, one exploring a condition I live with – mild-moderate hearing loss, and I have seen what value it has (you can read about that in this blog).
I’m also reminded through my daily work just how important it is to research the right things, and not least because we need to spend research funding wisely. Cochrane reviews, by gathering and summarising the best available evidence on a health topic, often show that there are huge evidence gaps, and we also see that primary research sometimes fails to address things that matter to people living with a condition. PSPs can help change this, by enabling people with experience as patients and their families, or as clinicians, to set the agenda for future research by working out which questions are most important to address.
I’ve asked PSP Co-ordinator Kathryn Fackrell, JLA Adviser and PSP Chair Toto Gronlund, and three steering group members to explain more about it. Linda Stratmann and Carolyn Farrell have hyperacusis and Veronica Kennedy is a Consultant Audiovestibular Physician.
What is hyperacusis and what is it like to live with it?
Kathryn: Some people have real difficulty coping with everyday sounds such as car noise, dishwashers, or people talking. This is a hearing problem called hyperacusis. It affects about one in ten adults and children. People with hyperacusis report that everyday sounds are intense, frightening, painful, or overwhelming. It can lead to feelings of fear, anger, distress, or anxiety, and people can become isolated and lose their independence. Many also have other conditions to contend with, such as tinnitus, chronic pain, depression, post-traumatic stress syndrome, autism, or dementia. Despite, the prevalence of hyperacusis, and ongoing research, much is unknown and likely misunderstood.
Carolyn: How would you feel if you couldn’t go out with friends, have dinner in a lively restaurant, go to the cinema, enjoy a family gathering or even enjoy time with your children? Hyperacusis prevents me from enjoying any of these things & more. I feel like a prisoner in my own body where isolation gives the only relief in a world that does not understand.
The unique issue with hyperacusis is that it is totally reliant on my surroundings and the behaviour of others. Most of the time others are not doing anything wrong but the sounds they make can cause physical pain, which is virtually impossible for non-sufferers to understand.
Linda: I have had hyperacusis for over twenty years. It was a long time before I even knew that the pain I experienced from everyday sounds even had a name. I had a long wait to receive the only therapy available – TRT (Tinnitus Retraining Therapy). After a year it was demonstrated that this had not improved matters, and I was told that there was nothing else that could be done for me. I started a Facebook group, where people can talk honestly about how they feel, knowing that other members will understand. We swap tips on how to cope, and updates from trusted sources on current research.
My focus nowadays is trying to live with this as fully as possible without risking making it any worse, and educating the public. Wherever I go I find that the public is very aware of tinnitus, but hardly anyone has heard of hyperacusis. So I am a woman on a mission; to tell the world that hyperacusis exists and what it is, that people who suffer from everyday noise are not crazy, or neurotic or making it up to get attention, they actually have damaged hearing.
Veronica: I have worked within Audiology for many years. One of the biggest challenges we face is how to best help adults and children with hyperacusis. There are currently no guidelines to steer the healthcare professional into how to best help the individual with hyperacusis. There is little evidence on how to best assess the degree and impact of hyperacusis as well as little on the mechanisms underlying hyperacusis that might help us develop management approaches. Generally the evidence that is present, relates to adults with only negligible attention given to children for whom it can be an overwhelming and distressing condition.
What might we achieve through the work of the PSP?
Kathryn: There is a growing interest in conducting hyperacusis research and, whilst this is good news, we do need to ensure that the direction this research takes is relevant and matters to those who really understand the issues and experiences surrounding hyperacusis.
Currently, the direction of research is typically guided by funders and researchers themselves. The JLA priority setting partnership garners the valuable insights of those experiencing hyperacusis, and those around them (friends, family and health professionals) to identify the most important unanswered questions for research to address. We want to make sure every voice is heard and that what matters most is turned into priority questions that will have a real and lasting impact on future research in hyperacusis.
The Nottingham Biomedical Research Centre will ensure the priority questions identified through this process are promoted and shared with funders and commissioners of research to ensure that future research in hyperacusis will make a real difference for adults and children living with hyperacusis.
Toto: Like Sarah, I had never heard of the debilitating condition of hyperacusis. I am captivated by the enthusiasm and dedication of the members of the steering group, and that they have chosen to help determine the research agenda in this area using the James Lind Alliance approach.
Having the experience and expertise of both professionals, carers and people with lived experience, in the full process of priority setting, is what makes the JLA so special. The other essentials of JLA are methodological transparency, and a commitment to using and contributing to the existing evidence base relating to the condition.
Asking people who are in the thick of it to get involved and identify their priorities is so obvious, but so often ignored. To give all this prioritisation a bit of punch, the aim of the Hyperacusis PSP is to prioritise and publicise the top 10 research questions. Fear not though, in practice none of the questions are lost, as they are all documented one way or another, and usually the top 25 get a good airing, and are all popular targets for researchers.
Veronica: I am really excited to be part of the JLA Steering Group and seeing what really matters to those living with hyperacusis or those helping individuals with hyperacusis.
A previous JLA PSP on Tinnitus has had such an impact on promoting awareness of tinnitus and pushing research forwards particularly helping the needs of children with tinnitus. I am hopeful that the Hyperacusis PSP will also lead to significant progress not only on the research field but also on how we can practically help those troubled with hyperacusis.
Linda: It is only in the last few years that there has been significant research on hyperacusis, which gives us all hope for the future. The JLA steering group is remarkable and inspiring. For years people with hyperacusis have been distressed at the lack of education given to clinicians, many of whom seem to have no understanding of what their hyperacusis patients are experiencing. Through the steering group we can actually feed back our experience to researchers, knowing that our concerns will be taken on board, and that recommendations will be made on our behalf. It is a highly significant step forward.
Carolyn: Humans are social creatures & the isolation caused by avoiding noise is unbearable. Can you imagine dealing with this every day? Knowing the medical profession are unable to help you? This is why me and people like me need this JLA to succeed. Finally some serious research is being undertaken, giving a chance to sufferers here in the UK. Increased awareness, recognition and understanding of this distressing invisible illness is needed by the medical profession and the general public.
If you have experience of hyperacusis, you can help!
Perhaps you have hyperacusis, or work with or support someone who does. You can help establish the priorities for hyperacusis research by sharing your experiences and questions about it in this short survey. Please fill it in today, share with others who might have relevant experience, and help make a difference.