Protocol for the development and validation of a patient-reported experience measure (PREM) for people with hearing loss: the PREM-HeLP

Helen Pryce*, Sian Karen Smith, Georgina Burns-O'Connell, Rebecca Knibb, Rosemary Greenwood, Rachel Shaw, Saira Hussain, Jonathan Banks, Amanda Hall, Jean Straus, Sian Noble

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review

3 Citations (Scopus)

Abstract

Introduction
Hearing loss is a common chronic health condition and adversely affects communication and social function resulting in loneliness, social isolation and depression. We know little about the patient experience of living with hearing loss and their views on the quality of the audiology service. In this study, we will develop and validate the first patient-reported experience measure (PREM) to understand patients’ experiences of living with hearing loss and their healthcare interactions with audiology services.

Methods and analysis
We will develop the PREM in three phases: (1) development of PREM prototype (items/statements) derived from previous qualitative work and narrative review, (2) cognitive interview testing of the PREM prototype using a ‘think aloud’ technique to examine the acceptability and comprehensibility of the tool and refine accordingly and (3) psychometric testing of the modified PREM with 300 participants to assess the reliability and validity of the tool using Rasch analyses with sequential item reduction. Eligible participants will be young people and adults aged 16 years and over who have hearing loss. Participants will be recruited from three clinical sites located in England (Bath, Bristol) and Scotland (Tayside) and non-clinical settings (eg, lip-reading classes, residential care settings, national charity links, social media).

Ethics and dissemination
The study was approved by the West of Scotland Research Ethics Service (approval date: 6 May 2022; ref: 22/WS/0057) and the Health Research Authority and Health and Care Research Wales (HCRW) Approval (approval date: 14 June 2022; IRAS project ID: 308816). Findings will be shared with our patient and public involvement groups, academics, audiology communities and services and local commissioners via publications and presentations. The PREM will be made available to clinicians and researchers without charge.
Original languageEnglish
Article numbere075229
Number of pages8
JournalBMJ Open
Volume13
Issue number11
DOIs
Publication statusPublished - 29 Nov 2023

Bibliographical note

Funding Information:
Burns-O'Connell @GeorgieBOC Acknowledgements The study is sponsored by University Hospitals Bristol and Weston NHS Foundation Trust, and supported by Aston University Applied Audiology research group. We would also like to extend our gratitude and thanks to the PPI members for their ongoing steering and support for the HeLP study. Contributors HP is the lead researcher leading the protocol development, ethical approval, data collection, data analysis and dissemination. SKS wrote the first draft of the protocol and final manuscript. GB-OC, RS, SH, JB, AH, RK, RG, JS and SN have provided feedback and support in the development of the protocol and study documents including the ethics application and interview schedule. All authors read, contributed to, edited and agreed the final manuscript.

Funding Information:
Funding This study is supported by an NIHR HSDR grant (Funding stream REF NIHR 131597). The sponsor for this study is the University Hospitals Bristol and Weston NHS Foundation Trust. Aston University (Applied Audiology research group, College of Health and Life Sciences) is the supporting institution. Dr Jonathan Banks is partly funded by National Institute for Health and Care Research Applied Research Collaboration West (NIHR ARC West) and NIHR Health and Social Care Delivery HS&DR (REF NIHR 131597).

Publisher Copyright:
© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.

Research Groups and Themes

  • HEHP@Bristol

Keywords

  • Adult
  • Humans
  • Adolescent
  • Reproducibility of Results
  • Hearing Loss/diagnosis
  • Deafness
  • England
  • Patient Reported Outcome Measures
  • Review Literature as Topic

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