Rheumatology Unit, Faculty of Medicine, Bnai-Zion Medical Center, Technion, Haifa, Israel.
Division of Rheumatology and Clinical Immunology, Department of Medicine, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA.
Rheumatology (Oxford). 2023 Dec 1;62(12):3957-3961. doi: 10.1093/rheumatology/kead316.
Patient-reported global disease activity (patient-global) is a myositis core set measure. Understanding the drivers of patient-global is important in patient assessment, and disagreements between physician and patient perception of disease activity may negatively impact shared decision making. We examined the determinants of patient-global and discordance between patient-global and physician-reported global disease activity (physician-global) in idiopathic inflammatory myopathies (IIMs).
Adults with IIM were enrolled in a prospective observational cross-sectional study. The following myositis outcome measures were collected: patient-global, physician-global, extramuscular and muscle disease activity, manual muscle testing, HAQ, creatine kinase, fatigue, pain, Patient-Reported Outcomes Measurement Information System physical function, 36-item Short Form, sit to stand, timed up and go, 6-minute walk and Actigraph steps/min/day count. A linear regression model was used to determine the contribution of each measure to patient-global. Discordance was defined as ≥3 points difference between patient-global and physician-global.
Fifty patients [60% females; mean age 51.6 years (s.d. 14.9)] with probable/definite IIM (EULAR/ACR classification criteria for IIM) were enrolled. Physical function and fatigue measures contributed to patient-global the most, followed by measures of pain, physical activity, quality of life and muscle disease, while physician-global was primarily driven by muscle disease activity. Patient-global was discordant with physician-global in 30% of the patients, of which patient-global was higher than physician-global in 66%. Pain, fatigue and physical activity contributed more to patient-global than physician-global.
Fatigue, pain and physical activity are important driving factors of the differences observed in the patient vs physician assessment of myositis disease activity. Understanding the gap between patient and physician perspectives may help provide better patient-centred care.
患者报告的整体疾病活动度（患者整体）是肌炎核心组的测量指标。了解患者整体的驱动因素对于患者评估很重要，并且患者和医生对疾病活动度的感知差异可能会对共同决策产生负面影响。我们研究了特发性炎性肌病（IIM）中患者整体和患者整体与医生报告的整体疾病活动度（医生整体）之间差异的决定因素。
招募了患有 IIM 的成年人参与前瞻性观察性横断面研究。收集了以下肌炎结局测量指标：患者整体、医生整体、肌肉外和肌肉疾病活动度、手动肌肉测试、HAQ、肌酸激酶、疲劳、疼痛、患者报告的测量信息系统身体功能、36 项简短形式、从坐姿到站姿、计时站立和行走、6 分钟步行和 Actigraph 步数/分钟/天计数。使用线性回归模型确定每个指标对患者整体的贡献。差异定义为患者整体和医生整体之间相差≥3 分。
共纳入 50 名患者[60%为女性；平均年龄 51.6 岁（标准差 14.9）]，患有可能/确定的 IIM（EULAR/ACR 肌炎分类标准）。身体功能和疲劳测量指标对患者整体的贡献最大，其次是疼痛、身体活动、生活质量和肌肉疾病，而医生整体主要受肌肉疾病活动度的驱动。在 30%的患者中，患者整体与医生整体不一致，其中 66%的患者整体高于医生整体。疼痛、疲劳和身体活动对患者整体的贡献大于医生整体。
疲劳、疼痛和身体活动是患者与医生评估肌炎疾病活动度时观察到差异的重要驱动因素。了解患者和医生观点之间的差距可能有助于提供更好的以患者为中心的护理。
