Title: Hearing Loss and Patient Reported Experience (HELP): Using patient experience to improve audiology services
Funder: Department of Health and Social Care

Abstract: Aims: We aim to improve knowledge of patient experience of hearing loss. People with hearing loss have to adapt communication and navigate hearing services (audiology). We have designed a way to show whether the services are working well for their patients._x000D_ Background: In hearing services, most people with hearing loss are given hearing aids, but 40% of these are not used. People stop using hearing aids because they find practical management and adapting to new sound hard. For some, managing the aids is more difficult than managing hearing loss without hearing aids. Hearing loss affects every aspect of communication and daily life and these 40% are getting no useful help. There are other services (e.g. Hearing Therapy) that could be offered to these people but some parts of the country don’t pay for those services._x000D_ Patient Reported Experience Measures (PREMs) are simple questionnaires about specific conditions that could be used to show whether audiology helped or not. We need this because the UK has different ways to provide services for hearing loss, from hospitals though to SpecSavers. We need to use the PREM to ensure that everyone gets the services they need and to prevent the fitting of aids that are not going to be used._x000D_ Design: To create the PREM, first we will talk to people with hearing loss who do and do not seek help from hearing services. We will recruit them from clinical sites and voluntary groups across the country. We will describe common issues and problems of coping with hearing loss and efforts to manage hearing aids, helped by our patient advisors. This information will lead us to produce a questionnaire. By asking people who work in hearing services and patient groups to help, we will improve how the questionnaire reads and looks. We will ask people to fill it out and tell us what they understand by each question. We will ask a large number of people to fill it in, compare it with other questionnaires and see if it is different for people who have had different types of NHS support with their hearing loss._x000D_ Finally we will see how the PREM works in a hearing clinic. By talking to audiology staff, we can find out whether this could be used in day to day practice. It can tell us about useful changes to the way services are delivered e.g. services at care homes, rather than clinics._x000D_ We will refer to groups of patient advisors for this project. These groups cover different age groups as they have quite different issues with wearing hearing aids. Additionally we will use four further groups to advise from the perspective of overlooked communities e.g. South Asian groups, Learning disability groups and residents in care homes. These groups will support our research by advising on recruitment, interview questions, understanding of our findings and how best to manage the project._x000D_ Dissemination: We will produce newsletters and publish them in Action on Hearing loss magazines as well as reporting on social media to engage with the community. We will also report findings at local and regional meetings and conferences and feed our findings into undergraduate and postgraduate audiology training. We will make the tool available for services to access and use in routine care and provide any necessary training and support. In the long term we hope to use this to show the services are better at identifying and providing the right help to different types of people.

Lay abstract: Background: Hearing loss will affect 1 in 2 of us. There is typically no cure and in most cases people are given hearing aids which amplify all sounds, making it difficult to distinguish between them. To learn to hear through hearing aids takes time and effort. We consider this to be ‘work’. Up to 40% of people reject hearing aids and find the work of getting used to them more difficult than the work of living with hearing loss. We consider this trade off a logical reaction on the part of patients._x000D_ Aims and Objectives: We aim to understand what the features of the work of living with hearing loss (illness work) and the work of living with hearing aids (treatment work) are. Once we understand this we can provide a tool to capture their efforts in clinical practice and in doing so inform services about what is particularly challenging about using their services. We hope that this will lead to changes in how services are delivered that means they support their patients’ needs better. This provides important information for commissioners choosing between audiology service providers. _x000D_ Methods: We propose three linked studies. Firstly to develop a clear conceptual framework to describe the trade-offs and efforts required to cope with hearing loss without hearing services and to use hearing services. Secondly to develop a Patient Reported Experience Measure (PREM) to complement existing outcome measures in practice. Finally to assess whether a measure would be taken up and used by services and whether it would help services decipher how they could adjust to meet patient needs._x000D_ Timelines for delivery: We propose a three year study to complete all work-packages. This includes milestones of developing a theoretical model of the work involved in managing hearing loss and audiological interventions by month 18 and using this to base the PREM tool (development completed by month 28). Finally we have a 10 month period of evaluation of the PREM in clinical practice._x000D_ Anticipated impact and dissemination: We anticipate that the PREM will be adopted by participating services after the evaluation. The conceptual framework model will provide critical new insight to audiology researchers & service providers. Our training and support package will enable wider adoption of the PREM tool and allow an understanding of the personal costs and trade-offs that are involved in achieving outcomes.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: EAR