Development of the First Patient‐Reported Experience Measure (PREM) for Hearing Loss in Audiology Care—My Hearing PREM

ABSTRACT Context Patient‐reported experience measures (PREMs) provide important insights into the challenges experienced when living with a chronic condition. Although patient‐reported outcome measures (PROMs) exist in audiology, there are no validated PREMs to help clinicians understand patient per...

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Main Authors: Sian K. Smith, Georgina Burns O'Connell, Rebecca Knibb, Rosemary Greenwood, Saira Hussain, Rachel Shaw, Jean Straus, Jonathan Banks, Amanda Hall, Nisha Dhanda, Sian Noble, Helen Pryce
Format: Article
Language:English
Published: Wiley 2024-12-01
Series:Health Expectations
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Online Access:https://doi.org/10.1111/hex.70088
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author Sian K. Smith
Georgina Burns O'Connell
Rebecca Knibb
Rosemary Greenwood
Saira Hussain
Rachel Shaw
Jean Straus
Jonathan Banks
Amanda Hall
Nisha Dhanda
Sian Noble
Helen Pryce
author_facet Sian K. Smith
Georgina Burns O'Connell
Rebecca Knibb
Rosemary Greenwood
Saira Hussain
Rachel Shaw
Jean Straus
Jonathan Banks
Amanda Hall
Nisha Dhanda
Sian Noble
Helen Pryce
author_sort Sian K. Smith
collection DOAJ
description ABSTRACT Context Patient‐reported experience measures (PREMs) provide important insights into the challenges experienced when living with a chronic condition. Although patient‐reported outcome measures (PROMs) exist in audiology, there are no validated PREMs to help clinicians understand patient perspectives and identify areas where patients may need additional support or interventions. Objective The aim of this study was to develop and evaluate content for the new ‘My Hearing PREM’, which captures lived experiences of hearing loss from patients’ perspectives. Design My Hearing PREM was developed and tested in two key phases. Phase 1 involved generating the PREM prototype in accordance with our conceptual model of the lived experience of hearing loss. In Phase 2, cognitive interviews were conducted with adults with hearing loss to appraise the content of the PREM (relevance, clarity, acceptability and comprehensiveness) and assess its respondent burden. Key stakeholders (e.g., adults with hearing loss, patient and public representatives, clinicians and researchers) were consulted throughout Phases 1 and 2 to review and refine the PREM. Interview data were analysed using thematic analysis. Setting and Participants Sixteen participants (aged 16 years and over) with hearing loss took part in cognitive interviews, recruited from UK audiology departments and non‐clinical settings (e.g., lip‐reading classes, national charity links and social media). Results Most PREM items were found to be relevant, clear, acceptable and comprehensive. Several problems were identified, including items not working well with the response scale options, irrelevant questions and a lack of clarity about terms (e.g., healthcare professionals) and whether questions should be answered based on the use of hearing aids (or not). The PREM was amended accordingly. Conclusions Currently, no hearing loss‐specific PREMs exist in audiology. Involving multiple stakeholders in the development of the PREM helped to ensure that the items were relevant, clear, acceptable and comprehensive. The PREM is undergoing further evaluation and refinement in preparation for investigating the feasibility of implementing it into clinical practice. Patient or Public Contribution Ongoing Patient and Public Involvement and Engagement (PPIE) with key groups (South Asian Women's groups, young people's groups, learning disability networks and student populations) was integral to the study. PPIE members reviewed patient information sheets and consent forms, advised on recruitment, reviewed the interview schedule and checked coding and analysis procedures. PPIE members provided feedback on the PREM's comprehensibility. Members of the public, including adults attending lip‐reading classes and hearing aid users from the South Asian community, provided feedback on iterative PREM drafts.
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spelling doaj-art-c8aba2b14be5484d83a7ae79493634412025-08-20T02:04:15ZengWileyHealth Expectations1369-65131369-76252024-12-01276n/an/a10.1111/hex.70088Development of the First Patient‐Reported Experience Measure (PREM) for Hearing Loss in Audiology Care—My Hearing PREMSian K. Smith0Georgina Burns O'Connell1Rebecca Knibb2Rosemary Greenwood3Saira Hussain4Rachel Shaw5Jean Straus6Jonathan Banks7Amanda Hall8Nisha Dhanda9Sian Noble10Helen Pryce11School of Optometry Department of Audiology, College of Health and Life Sciences Aston University Birmingham UKSchool of Optometry Department of Audiology, College of Health and Life Sciences Aston University Birmingham UKSchool of Psychology, College of Health and Life Sciences Aston University Birmingham UKHealth Sciences University of York York UKSchool of Optometry Department of Audiology, College of Health and Life Sciences Aston University Birmingham UKSchool of Psychology, College of Health and Life Sciences Aston University Birmingham UKPatient and Public Involvement Lead, HeLP research studyNational Institute for Health Research, Applied Research Collaboration West (NIHR ARC West) University Hospitals Bristol and Weston NHS Foundation Trust Bristol UKSchool of Optometry Department of Audiology, College of Health and Life Sciences Aston University Birmingham UKPatient and Public Involvement Lead, HeLP research studyPopulation Health Sciences, Bristol Medical School University of Bristol Bristol UKSchool of Optometry Department of Audiology, College of Health and Life Sciences Aston University Birmingham UKABSTRACT Context Patient‐reported experience measures (PREMs) provide important insights into the challenges experienced when living with a chronic condition. Although patient‐reported outcome measures (PROMs) exist in audiology, there are no validated PREMs to help clinicians understand patient perspectives and identify areas where patients may need additional support or interventions. Objective The aim of this study was to develop and evaluate content for the new ‘My Hearing PREM’, which captures lived experiences of hearing loss from patients’ perspectives. Design My Hearing PREM was developed and tested in two key phases. Phase 1 involved generating the PREM prototype in accordance with our conceptual model of the lived experience of hearing loss. In Phase 2, cognitive interviews were conducted with adults with hearing loss to appraise the content of the PREM (relevance, clarity, acceptability and comprehensiveness) and assess its respondent burden. Key stakeholders (e.g., adults with hearing loss, patient and public representatives, clinicians and researchers) were consulted throughout Phases 1 and 2 to review and refine the PREM. Interview data were analysed using thematic analysis. Setting and Participants Sixteen participants (aged 16 years and over) with hearing loss took part in cognitive interviews, recruited from UK audiology departments and non‐clinical settings (e.g., lip‐reading classes, national charity links and social media). Results Most PREM items were found to be relevant, clear, acceptable and comprehensive. Several problems were identified, including items not working well with the response scale options, irrelevant questions and a lack of clarity about terms (e.g., healthcare professionals) and whether questions should be answered based on the use of hearing aids (or not). The PREM was amended accordingly. Conclusions Currently, no hearing loss‐specific PREMs exist in audiology. Involving multiple stakeholders in the development of the PREM helped to ensure that the items were relevant, clear, acceptable and comprehensive. The PREM is undergoing further evaluation and refinement in preparation for investigating the feasibility of implementing it into clinical practice. Patient or Public Contribution Ongoing Patient and Public Involvement and Engagement (PPIE) with key groups (South Asian Women's groups, young people's groups, learning disability networks and student populations) was integral to the study. PPIE members reviewed patient information sheets and consent forms, advised on recruitment, reviewed the interview schedule and checked coding and analysis procedures. PPIE members provided feedback on the PREM's comprehensibility. Members of the public, including adults attending lip‐reading classes and hearing aid users from the South Asian community, provided feedback on iterative PREM drafts.https://doi.org/10.1111/hex.70088audiologyhearing losslifeworld‐led approachPREMqualitative researchstakeholder engagement
spellingShingle Sian K. Smith
Georgina Burns O'Connell
Rebecca Knibb
Rosemary Greenwood
Saira Hussain
Rachel Shaw
Jean Straus
Jonathan Banks
Amanda Hall
Nisha Dhanda
Sian Noble
Helen Pryce
Development of the First Patient‐Reported Experience Measure (PREM) for Hearing Loss in Audiology Care—My Hearing PREM
Health Expectations
audiology
hearing loss
lifeworld‐led approach
PREM
qualitative research
stakeholder engagement
title Development of the First Patient‐Reported Experience Measure (PREM) for Hearing Loss in Audiology Care—My Hearing PREM
title_full Development of the First Patient‐Reported Experience Measure (PREM) for Hearing Loss in Audiology Care—My Hearing PREM
title_fullStr Development of the First Patient‐Reported Experience Measure (PREM) for Hearing Loss in Audiology Care—My Hearing PREM
title_full_unstemmed Development of the First Patient‐Reported Experience Measure (PREM) for Hearing Loss in Audiology Care—My Hearing PREM
title_short Development of the First Patient‐Reported Experience Measure (PREM) for Hearing Loss in Audiology Care—My Hearing PREM
title_sort development of the first patient reported experience measure prem for hearing loss in audiology care my hearing prem
topic audiology
hearing loss
lifeworld‐led approach
PREM
qualitative research
stakeholder engagement
url https://doi.org/10.1111/hex.70088
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