Ecolog validity- patient-reported chronic disease*(RMI)

描述（由申请人提供）：有效、可靠、高效的慢性疾病症状自我报告评估是临床研究的必要条件。尽管在患者报告结果（PROs）的心理测量学方面取得了许多进展，但关于它们与患者日常生活中症状的日常经历之间的关联的信息一直缺乏。确保评价的生态有效性是至关重要的，因为大多数评价依赖于相对较长的报告周期（几周到几个月）的回顾，而认知科学研究表明，对主观状态的回忆容易产生偏差。电子日记和收集患者数据的相关方法的出现，使得评估该领域的PROs成为可能。该项目的目标是确定现有PRO项目和量表（与该RFA相关的网络中心合作选择的内容）的生态有效性。我们假设根据指定的报告期、提供给患者的指示、项目反应选项和项目内容修改项目可以提高生态效度。几项研究对慢性风湿病和神经系统疾病患者的疼痛和疲劳进行了研究，将通过比较瞬间日记数据和回忆数据来检验这一假设。更广泛的环境影响患者的表现与PRO项目也将进行检查。对于网络项目，我们建议提供日记方法和专业知识来评估合作中心的生态有效性，包括评估临床试验背景下变化措施的全球印象。

DESCRIPTION (provided by applicant): Valid, reliable, and efficient self-report assessments of symptoms of chronic diseases are necessary for clinical research. Although there have been many advances in the psychometrics of patient-reported outcomes (PROs), there has been an absence of information about their association with patients' daily experiences of symptoms in their daily lives. Ensuring the ecological validity of PROs is paramount, because most PROs rely on retrospection over relatively long reporting periods (weeks to months) and cognitive science research has shown that recall of subjective states is prone to bias. The advent of electronic diaries and associated methods for collecting patient data has made it possible to assess PROs in the field. The goal of this project is to determine the ecological validity of existing PRO items and scales (content selected in collaboration with Network Centers associated with this RFA). We hypothesize that revising items according to the reporting period specified, the instructions provided to patients, the item response options, and item content can improve ecological validity. Several studies examining pain and fatigue in chronically-ill rheumatologic and neurological patients will test this hypothesis by comparing momentary diary data with recall data. Broader contextual influences on patient performance with PRO items will also be examined. For the Network Projects, we propose providing the diary methodology and expertise to assess ecological validity for the collaborating Centers, including the assessment of global impression of change measures in the context of clinical trial.