Patient-reported Outcomes and Adult Patients' Disease Experience in the Idiopathic Inflammatory Myopathies. Report from the OMERACT 11 Myositis Special Interest Group
Patient-reported Outcomes and Adult Patients' Disease Experience in the Idiopathic Inflammatory Myopathies. Report from the OMERACT 11 Myositis Special Interest Group
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DOI：
10.3899/jrheum.131247
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发表时间：
2014-03-01
影响因子：
3.9
通讯作者：
Christopher-Stine, Lisa
中科院分区：
文献类型：
--
作者：
Alexanderson, Helene;Del Grande, Maria;Christopher-Stine, Lisa
风湿学中新成立的结果测量(OMERACT)肌炎特殊兴趣小组(SIG)被建立以检查患者报告的肌炎结果测量(PROM)。在OMERACT第11届会议上，对胎膜早破用于特发性炎症性肌病(IIM)和其他神经肌肉疾病的文献进行了综述。该小组通过OMERACT真理、歧视和可行性过滤器，更详细地研究了IIM患者中更广泛评估的2 PROM、肌炎活动概况和麦克马斯特-多伦多关节炎患者偏好残疾问卷。讨论了对肌炎患者症状的定性研究的初步结果，强调了所经历的症状的范围：疼痛、身体紧张/僵硬、疲劳、疾病对情感生活和关系的影响以及与治疗相关的副作用。在讨论了这些结果以及自OMERACT 11以来的其他讨论之后，制定了一项研究议程。在IIM中评估胎膜早破的下一步将需要更多的焦点小组，这些患者来自不同的疾病活动范围和来自多个国际环境的不同肌炎疾病表型和表现。该小组最初将专注于成人的皮肌炎和多发性肌炎。定性分析将有助于确定疾病的共性和与患者相关的不同方面，鉴于这些疾病的不同表现，洞察是至关重要的。在这些定性研究的基础上，可以检查现有的肌炎胎膜早破，以更彻底地评估内容的有效性，并将重要的是确定领域测量中的差距，这将是开发IIM患者相关领域的初步核心集合所必需的。
The newly formed Outcome Measures in Rheumatology (OMERACT) Myositis Special Interest Group (SIG) was established to examine patient-reported outcome measures (PROM) in myositis. At OMERACT 11, a literature review of PROM used in the idiopathic inflammatory myopathies (IIM) and other neuromuscular conditions was presented. The group examined in more detail 2 PROM more extensively evaluated in patients with IIM, the Myositis Activities Profile, and the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire, through the OMERACT filter of truth, discrimination, and feasibility. Preliminary results from a qualitative study of patients with myositis regarding their symptoms were discussed that emphasized the range of symptoms experienced: pain, physical tightness/stiffness, fatigue, disease effect on emotional life and relationships, and treatment-related side effects. Following discussion of these results and following additional discussions since OMERACT 11, a research agenda was developed. The next step in evaluating PROM in IIM will require additional focus groups with a spectrum of patients with different myositis disease phenotypes and manifestations across a range of disease activity, and from multiple international settings. The group will initially focus on dermatomyositis and polymyositis in adults. Qualitative analysis will facilitate the identification of commonalities and divergent patient-relevant aspects of disease, insights that are critical given the heterogeneous manifestations of these diseases. Based on these qualitative studies, existing myositis PROM can be examined to more thoroughly assess content validity, and will be important to identify gaps in domain measurement that will be required to develop a preliminary core set of patient-relevant domains for IIM.