Rheumatology, Darent Valley Hospital, Dartford, Kent, UK and Department of Rheumatology, Ain Shams University, Cairo, Egypt.
Clin Exp Rheumatol. 2014 Jul-Aug;32(4):547-52. Epub 2014 Jun 30.
We aimed to assess the validity and reliability of a Patient Reported Experience Measures (PREMs) questionnaire which can be used in standard clinical practice to measure self-defined important experiences of inflammatory arthritis patients.
The Patient Reported Experience Measures (PREMs) questionnaire was conceptualised based on frameworks used by the WHO Quality of Life tool, as well as the PRO measurement information system (PROMIS). Cognitive interviews were conducted with 94 inflammatory arthritis patients (diagnosed according to EULAR/ACR criteria 2010), with a range of severity and disease activity to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of physicians, nurses, health educators and occupational therapy (OTs) feedback, in addition to clinometric and psychometric methods. The latter included Rasch and internal consistency reliability analyses. The PREMs questionnaire was developed centered around 5 categories: 1. Journey to diagnosis, 2. Impact of the disease on the patients' everyday life, 3. knowledge about the disease, 4. the care in the hospital, and 5. patient education and aftercare (including what to do in case of exacerbation). After analysis for ordered response options, content analysis and semi structured group discussion to cover these 5 categories, 32 questions were identified as the final item set. The routine clinic was used as a setting for the questionnaire evaluation. 183 patients were asked to complete the PROMs as well as PREMs questionnaires whilst sitting in the waiting area before being examined by the treating physician. Reliability and comprehensibility was assessed using the Test-retest reliability (reproducibility).
The tool was derived from RA patients, therefore establishing its face validity. The PREMs questionnaire showed a high degree of comprehensibility (9.3). It demonstrated a relatively high-standardised alpha (0.892). The questionnaire items correlated significantly (p<0.01) with clinical parameters of disease activity, PROMs, self-helplessness and DAS-28 score supporting its construct validity. The domain of impact of arthritis correlated significantly (p<0.01) with health related quality of life (HRQOL) score as well as disease activity and damage measures, establishing its criterion validity. Patient education and aftercare correlated significantly (p<0.01) with adherence to therapy.
The studied PREMs questionnaire had fair psychometric properties as it was valid, reliable and comprehensible. The patients were able to comprehend varying response options on a categorical scale, and could accurately respond to items using a 7-day recall period. It provides informative measure for the patients' experience with their disease, and in the meantime, facilitates incorporating the patients' feedback into the patients' management algorithm.
我们旨在评估一种可用于标准临床实践以衡量炎症性关节炎患者自定重要体验的患者报告体验测量（PREMs）问卷的有效性和可靠性。
基于世界卫生组织（WHO）生活质量工具以及患者报告测量信息系统（PROMIS）使用的框架，概念化了患者报告体验测量（PREMs）问卷。对 94 名炎症性关节炎患者（根据 EULAR/ACR 2010 标准诊断）进行认知访谈，评估疾病严重程度和活动度，以确定问卷问题的项目池。根据患者以及由医生、护士、健康教育者和职业治疗师（OT）组成的跨学科团队的反馈，结合临床计量学和心理计量学方法，进行项目选择和简化。后者包括 Rasch 分析和内部一致性可靠性分析。PREMs 问卷围绕以下 5 个类别展开：1. 诊断之旅，2. 疾病对患者日常生活的影响，3. 疾病知识，4. 医院护理，5. 患者教育和随访（包括在病情恶化时该怎么做）。在对有序反应选项进行分析、内容分析和半结构化小组讨论以涵盖这 5 个类别后，确定了 32 个问题作为最终项目集。在常规诊所中，在接受治疗医生检查前，让 183 名患者坐在候诊室中填写 PROMs 和 PREMs 问卷。使用测试-重测信度（可重复性）评估可靠性和可理解性。
该工具源自 RA 患者，因此确立了其表面有效性。PREMs 问卷具有高度的可理解性（9.3）。它显示出相对较高的标准化α值（0.892）。问卷项目与疾病活动度、PROMs、无助感和 DAS-28 评分等临床参数显著相关（p<0.01），支持其结构有效性。关节炎影响领域与健康相关生活质量（HRQOL）评分以及疾病活动度和损伤测量显著相关（p<0.01），确立了其效标有效性。患者教育和随访与治疗依从性显著相关（p<0.01）。
研究中的 PREMs 问卷具有良好的心理测量特性，因为它是有效、可靠和可理解的。患者能够理解类别量表上的不同反应选项，并能够在 7 天的回忆期内准确地回答项目。它为患者对自身疾病的体验提供了有价值的衡量标准，同时有助于将患者的反馈纳入患者管理算法。
