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 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.

Publication DOI: https://doi.org/10.1111/hex.70088
Divisions: College of Health & Life Sciences > School of Optometry > Audiology
College of Health & Life Sciences
College of Health & Life Sciences > School of Psychology
College of Health & Life Sciences > Aston Institute of Health & Neurodevelopment (AIHN)
Aston University (General)
Funding Information: The study is sponsored by University Hospitals Bristol and Weston NHS Foundation Trust and supported by the Aston University Applied Audiology research group. The authors would like to thank the participants for their time and extend our gratitude to PPIE
Additional Information: Copyright © 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Uncontrolled Keywords: audiology,hearing loss,lifeworld-led approach,PREM,qualitative research,stakeholder engagement
Publication ISSN: 1369-7625
Last Modified: 02 Dec 2024 09:08
Date Deposited: 07 Nov 2024 10:24
Full Text Link:
Related URLs: https://onlinel ... .1111/hex.70088 (Publisher URL)
PURE Output Type: Article
Published Date: 2024-12
Published Online Date: 2024-11-06
Accepted Date: 2024-10-16
Authors: Smith, Sian K. (ORCID Profile 0000-0002-9541-2221)
Burns-O'Connell, Georgina (ORCID Profile 0000-0001-6430-8627)
Knibb, Rebecca (ORCID Profile 0000-0001-5561-0904)
Greenwood, Rosemary
Hussain, Saira (ORCID Profile 0000-0002-8422-1366)
Shaw, Rachel (ORCID Profile 0000-0002-0438-7666)
Straus, Jean
Banks, Jonathan
Hall, Amanda (ORCID Profile 0000-0001-8520-6005)
Dhanda, Nisha
Noble, Sian
Pryce, Helen (ORCID Profile 0000-0001-5183-6236)

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