School of Optometry, Department of Audiology, College of Health and Life Sciences, Aston University, Birmingham, UK.
School of Psychology, College of Health and Life Sciences, Aston University, Birmingham, UK.
Health Expect. 2024 Dec;27(6):e70088. doi: 10.1111/hex.70088.
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.
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.
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.
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).
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.
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.
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.
患者报告的体验测量（PROMs）提供了有关患有慢性疾病时所面临挑战的重要见解。尽管听力学中存在患者报告的结果测量（PROMs），但尚无经过验证的 PREM 可帮助临床医生了解患者的观点并确定患者可能需要额外支持或干预的领域。
本研究的目的是开发和评估新的“我的听力 PREM”的内容，该内容从患者的角度捕捉听力损失的生活体验。
我的听力 PREM 在两个关键阶段进行了开发和测试。第 1 阶段根据我们对听力损失生活体验的概念模型生成 PREM 原型。在第 2 阶段，对听力损失成年人进行认知访谈，以评估 PREM 的内容（相关性、清晰度、可接受性和全面性），并评估其受访者负担。关键利益相关者（例如，听力损失成年人、患者和公众代表、临床医生和研究人员）在第 1 阶段和第 2 阶段都进行了咨询，以审查和完善 PREM。使用主题分析对访谈数据进行分析。
从英国听力科和非临床环境（例如，读唇语班、国家慈善机构联系人和社交媒体）招募了 16 名年龄在 16 岁及以上的听力损失参与者参加认知访谈。
大多数 PREM 项目都被认为是相关的、清晰的、可接受的和全面的。确定了一些问题，包括某些项目与响应量表选项配合不佳、无关问题以及对术语（例如，医疗保健专业人员）和是否应根据助听器的使用（或不使用）来回答问题的清晰度不足。PREM 也相应地进行了修订。
目前，听力学中尚无专门针对听力损失的 PREM。在 PREM 的开发过程中让多个利益相关者参与有助于确保项目具有相关性、清晰性、可接受性和全面性。正在对 PREM 进行进一步的评估和完善，为将其纳入临床实践的可行性研究做准备。
与关键群体（南亚妇女团体、年轻人团体、学习障碍网络和学生群体）持续进行的患者和公众参与和参与（PPIE）是该研究的重要组成部分。PPIE 成员审查了患者信息表和同意书，就招募提供建议，审查了访谈时间表，并检查了编码和分析程序。PPIE 成员对 PREM 的易懂性提供了反馈。参加读唇语班的成年人和南亚社区的助听器使用者等公众成员对迭代 PREM 草案提供了反馈。
